Neonatal Doc

Loss

2007-07-15T18:06:00.000-04:00

Our rounds the other day were accompanied by the sound of weeping. It was nothing complicated. A baby had been born too soon, struggled for a few days, and now was breathing his last, and the family was devastated.

On a somewhat related note, the wife of my nephew recently miscarried at the end of her first trimester. When I heard it, I just threw up my hands. Why, I wondered, does it always seem that the couples who have trouble conceiving are the ones who lose the pregnancy? I can think of hardly anything appropriate to say to them.

After years of seeing various types of pregnancy and newborn loss, I have decided that there are really no good words of comfort at such a time. The loss is so final, so absolute, so irrevocable, that only time can lessen the wound and even then often not completely heal it. We can express our condolences to the family and offer to do anything we can for them, but beyond that we seem relatively powerless. Although it's true that a miscarriage may have occurred because the baby was defective, that's hardly of much comfort and might only bring up a worse feeling. The religious may take comfort in the thought and words that it's God's will, but in the acute stage of death and separation that, too, is of only limited help.

Such scenes of loss are also a reminder to me of how huge a thing it is when a child dies. I frequently write in this blog about decisions regarding resuscitation of very premature babies. We realize what an enormous sadness it can be to save a child who then suffers through life, but we can never forget either the enormity of a death. It, too, affects parents forever.

If I never see again the universal sign of grief of a mother or father stretched out over an incubator, their head laying sideways on it with despair on their face as they grieve their lost newborn, it will be okay with me. But I'm sure I will, and I'm sure I will again feel at such a loss for something right to say. We will offer words and gestures of support, but they will seem simply too small.

Prejudice

2007-07-10T12:47:00.000-04:00

Racial prejudice is a touchy subject, but that's never stopped me in the past from discussing something, so why should it now?

I speak specifically of Isaiah Washington, the black actor whose contract for Grey's Anatomy was not renewed. Several months ago Washington used a slur to describe a gay castmate, T.R.Knight; presumably, he called him a faggot. He apparently repeated this slur at an awards show. Subsequently Washington apologized to Knight and even, in a somewhat bizarre twist, entered rehab to cure himself of this. (Of what? His homophobia? His prejudice against gays? Or just his inability to stop putting his foot in his mouth?)

Alas, it was to no avail, and at the end of the season Washington was canned. Miffed, Washington blamed his dismissal on racial discrimination - I'm guessing that the producers who fired him are not black - and here's where I don't quite get it. Racial prejudice? Has he forgotten what he called his castmate? Has he paused to consider that if another actor had called him a racial slur, the n-word, the actor would have likely been immediately fired? Does he think that prejudice against gays is less reprehensible than prejudice against someone based on their skin color?

Don't get me wrong. I know that racial prejudice is alive and well in America. You'd have to be blind and deaf and, frankly, dumb to think it didn't exist. But I just don't see it here, and it seems to me that when racial prejudice is claimed when it doesn't exist, it just hurts the cause rather than helps it.

I realize that, since I'm not black, I might have no business deciding when racial discrimination exists and when it does not. Maybe I'm missing something here, and if so, I'd be glad to have someone point it out to me.

Yes II

2007-07-08T17:25:00.000-04:00

Whenever I talk about resuscitation of extremely preterm children, as I did in my most recent post, a couple of issues keep coming up in the comments.

One issue is the thought that when deciding on what to do with a, say, 23 weeker, we should look at the baby and see how he is doing before deciding on resuscitation. If he's active or crying, then go for it, and don't if he's not. As one commenter put it, we should look at his "will to live." It sounds nice, but there' s a problem with it: how a 23 to 24 weeker does in the delivery room has little bearing on their eventual outcome. Kids who look great might end up severely impaired and vice versa. In fact, even kids who need CPR in the delivery room don't necessarily do worse than the others.

A variant on the above is to see how the baby does in the first couple of days and stop heroic support if the baby is doing poorly. I agree that we should always be reassessing the baby's chances and discussing them with the parents, but there are a few practical problems with this. If the baby has a massive intracranial hemorrhage, then it can make it relatively easy, although still heart wrenching for the parents, to stop support. But even kids who have a normal head ultrasound at age two or three days can end up in the severely disabled group. It's just hard to predict. Also, although ethically stopping life support is equivalent to not starting it, parents don't always see it that way. It's probably easier for them to not start it than to stop it.

Another issue has to do with whether Scandinavian results can be extrapolated to America. Put another way, as one commenter did, you should see what your local results are and discuss those with the parents. Excellent points, but again things get a little sticky. The problem is that one of the factors most important in outcomes is socioeconomic status. Premies from homes of educated parents do better on intelligence testing and so on than premies from other homes, presumably because there is more stimulation offered to the child, more books read to them and so on.

So, if we're saying that groups with worse long term outcomes - a higher chance of disability - should perhaps not be resuscitated, then we're getting pretty close to saying that kids from lower socioeconomic groups are less deserving of resuscitation. And that's just a small step away from saying that poor black kids are less deserving of resuscitation, and I don't even want to get close to saying that.

Discrimination is a problem that's almost inherent when we use quality of life to guide us in our decisions to resuscitate or not. Usually it's discrimination against the handicapped that is mentioned, but I think that discrimination on a racial or socioeconomic basis can occur as well, and personally, I would really like to avoid that.

Yes

2007-07-05T20:42:00.000-04:00

I've written many posts in the past about outcomes of babies born extremely preterm, and there have been some heated debates about these outcomes. Are they good enough? Are we giving parents adequate and honest information? Are we justified in resuscitating extremely preterm kids, or vice versa, in not doing so?

Two articles in the July issue of Pediatrics address the issue, and they are, I think, for the most part reassuring to those of us who routinely resuscitate extremely premature babies.

Both articles are from Sweden. One of them looks at how preterm infants born in 1973 to 1979 are doing at the age of 23 to 29 years. Not surprisingly, the more preterm you are the greater your chances of having a disability. However, the percentage of people born at 24 to 28 weeks with disabilities was only 13.2%, and only 18% of them live with their parents. Sure, there's still room for improvement, but it's good to see that the large majority of 24 to 28 weekers were reasonably functioning adults.

The second study examined mental health and social competencies of 10 to 12 year old children born at 23 to 25 weeks gestation. Again, to some degree it's a good news/bad news report. On the one hand, the extremely preterm born children were more likely to have problems with anxiety, depression, attention, thought, and social problems, and more that one-half were experiencing school problems. On the other hand, though, 85% of them were attending mainstream schools, and the majority were not having major adjustment difficulties.

I find these studies reassuring and am especially glad to have them in light of the Epicure study, a study done in the 1990's in Great Britain of 23 to 25 weekers that, frankly, demonstrated pretty crummy outcomes. There are many of us neonatologists who believe that the Epicure results are not truly representative of outcomes of most 23 to 25 weekers, and these Swedish studies provide data to support that belief.

This hardly, of course, ends the discussion about resuscitating these kids, but perhaps it will help some people understand why I feel a little funny if I don't resuscitate a 23 weeker.

Greetings

2007-07-03T19:39:00.000-04:00

I dialed the phone number to give the mom some news about her baby. An answering machine clicked on: "Hi. This is me. If you don't know who me is, then maybe you shouldn't be calling."

Okay.... that was friendly.

Another time I dialed a mom and, after what seemed like an interminable time of nearly indecipherable music, got this message: "I'm not home right now, but if you leave your number, I'll try to return your call at my earliest convenience, not yours. Let it be what it be, let it do what it do." Although I guess I expect her to return the call at her convenience and not mine, it seemed sort of unnecessary and rude to point that out in the answering machine message.

Yet another time I received an answering machine greeting from a mom who curtly said that "if she thought it important enough," she would return my call.

What is it with these in your face answering machine greetings? I don't really get it. Why do they find it amusing or a good idea to tick someone off with their messages?

I wonder what kind of sociopathology these moms were raised with to cause them to find such greetings acceptable. In other words, didn't their mothers teach them any phone manners? And even if their mothers didn't teach them such niceties of life, it seems it wouldn't take long for someone to figure out that in this department, you catch more flies with honey than with vinegar.

Is this yet another example of the differences between my subculture and that of the parents of my patients, or is this just an exception of a few cranky mothers? I don't know, but I don't like it.

Maldistribution

2007-06-27T13:25:00.000-04:00

I've been researching dogs lately, as a possible prelude to getting one, and I'm impressed by the amount of money we spend on pets each year. There's food, veterinary care, and, of course, toys and trinkets for our little darlings. A recent Newsweek article puts the figure at about $40 billion annually in the U.S. Can we justify spending so much on pets when there is so much human need in the world?

I think we're making strides in the war on hunger in the world, but you can be sure that it still exists in some areas. Malawi, for example, a poor country in southeast Africa, after a drought a couple of years ago needed about $150 million to prevent wide spread hunger during the winter. $150 million is a lot of money to a country like Malawi, but in the grand scheme of things it's not much, only a fraction of what we spend on dog food each year in the U.S. (and, for what it's worth, the amount of money it costs to wage the Iraq war for about half a day.)

The above is only one area in which there are great inequities of material goods and other things. I wrote before about how the amount of money spent on one very small premie, say about $500,000 for his hospitalization, could buy insecticide treated mosquito nets for 50,000 Africans at risk for malaria. That same amount of money, if used toward some basic infant care like giving a bath after birth with a disinfectant soap in a third world country, could save perhaps hundreds or thousands of lives.

How do we allow this to happen? Why do we continue to give our dogs and cats meat and treats when we know there are people who could use the money for basic needs? I think the answer is that we are only human, and humans can't seem to do without pets, and we also can't seem to appreciate the needs of other people unless they are right under our noses. I am well aware that people in the Sudan or elsewhere could use my money, but if I don't get a dog it will be because I don't want the hassle and not because I'm going to spend my dog money on aid to Africa (although after I publish this post I might send some money to one of my favorite charities.) I'm guessing that there are even some people in Malawi that have pets; maybe even some hungry people there have pets and feed them.

Actually, I've only begun to talk about all the inequities there are in distribution of resources. Looking at just health care in the U.S., think of how much we spend on dialysis for the very elderly or ventilator care for people with massive head injuries and no hope of recovery, and think of how many prescription drugs that money could buy for people who can't afford their blood pressure medication. The inequities are astounding, the more you think about it. The fact that we are only human, while a true reason for why we treat our dogs better than humans halfway across the world, still should not be an excuse to ignore completely this maldistribution of resources.

P.S. You find out some interesting stuff when researching pets. I've come across information about holistic pet food and a book called Animals and the Afterlife, and discovered that April 24 - 30 was National Scoop the Poop week.

Barrier

2007-06-23T20:25:00.000-04:00

I watched some professional fishing on TV the other day. I was working out and there didn't seem to be much else on, so I gave it a try. It's not the kind of sport you would think would lend itself easily to professional competition, let alone compelling TV, but it was actually pretty interesting. The pro fishermen wear shirts loaded with brand name decals, just like race car drivers, and they high five each other when they pull in a big one. I think it's better than actual fishing, because they edit out all the boring parts where you're just sitting around waiting for a fish to bite, and only show the fun parts of reeling in the catch. It's also a lot less slimy on TV than in real life.

This was a redfish tournament, where the fish caught were between about 2 and 6 pounds, weights, I noted, pretty similar to those of the premature babies we take care of. The fishermen got credit for their two biggest fish of the day to be weighed. If they already had two and caught a bigger one, they would throw back a smaller one.

Sometimes we wish we could throw a tiny baby back into the uterus to grow some more, but it obviously doesn't work that way with humans. (That doesn't stop people from joking about it, though. If I had a nickel for every time I heard an obstetrician joke about throwing a tiny one back, I'd be able to retire now.) Occasionally someone talks about a need for an artificial placenta, but nothing has really come of it.

And that might be a good thing. We already struggle with the ethics of taking care of 23 and 24 weekers, babies with mortality and disability rates higher than we would like. What if we had an artificial placenta that we could hook 20 weekers up to? What if we could save some, maybe 20 percent, with a 50 to 75 percent major disability rate in survivors, rates worse than those of our current 23 weekers? Would we be offering that care to parents of such babies? What if some babies at even lower gestations survived, but only a small percent? Where would we stop?

Now, at least, we have a barrier at about 22 to 23 weeks below which no babies survive, because the alveoli - the air sacks in the lungs - are just too far away from the blood vessels that go to the lungs, so carbon dioxide and oxygen can't be exchanged. It's sometimes said that our advances in technology outstrip our advances in ethics (although I don't really think that's true), but hey, it could be worse. Maybe it's good we have the barrier of 22 to 23 weeks - although that's hardly any comfort to the parents of a lost 21 weeker.

Numbers

2007-06-21T08:53:00.000-04:00

The 620 gram baby was born at 24 and one-seventh weeks gestation, based on a 17 week ultrasound. Her temperature on admission was a little low, 35.9 degrees. We gave her 2.5 cc's of surfactant and placed her on a ventilator with settings of a rate of 46, peak inspiratory pressure of 20, Peep of 4, FiO2 of .60, and an inspiratory time of 0.3 seconds. Her first blood gas had a pH of 7.26, pCO2 of 50, and pO2 of 56. Bingo.

We also started her on ampicillin 100 mg/kg/day and gentamicin 5 mg/kg every 48 hours. We started her fluids at 120 cc/kg/day but by age 24 hours her sodium was 153, potassium 5.4, chloride 118, and bicarbonate18, and the fluids were increased to 170 cc/kg/day. That made her blood sugar go up, though, to 278 so we started an insulin drip at .06 units/kg/hour or 0.3 cc's per hour. When her sodium rose to 156 we had to increase fluids further to 200 cc/kg/day. On the second day we started feeds at 1 cc every 3 hours or 13 cc/kg/day.

The above numbers are not from a real patient but rather a fictional composite of many patients like this. The number of numbers used in neonatology can be daunting. Some medical students and residents rotating through have trouble handling it.

Personally, though, I love the numbers, and they are one reason I went into neonatology. I love the way we can manipulate the baby's sodium levels by the amount of water we give him and the blood gases by changing the ventilator settings. Remember the story problems you used to have to do in elementary school math? Well, I loved those things, and neonatology is like the ultimate story problem.

The challenge, of course, is remembering that these babies are not just a mass of numbers but real human beings. We can get so caught up in adjusting the fluids in a tiny baby like this that it seems almost as much like a physiology experiment as it is care for a live baby. Sometimes I like to go look at the babies, see their fingers and toes and ears. I like to see the moms visiting them and letting the baby's fingers wrap around her finger. I like the numbers because they are part of a human baby, and managing them helps them become larger and better humans.

Selective

2007-06-19T19:42:00.000-04:00

We were discussing a mother pregnant with quintuplets at our weekly perinatal conference. This was many years ago, when five to six fertilized eggs at a time were routinely placed in a woman during in vitro fertilization, and we were grappling with the ethics of that and ways to prevent such high order multiple pregnancies.

"In my opinion," said one of my partners, "A woman should have to agree to have selective termination if more than three embryos result before we agree to have that many fertilized eggs placed." One of the perinatologists agreed. Hmmm, I thought. So much for the non-judgmental approach.

The subject of selective termination came up, not surprisingly, in the comments section of my previous post about sextuplets. Selective termination means reducing the number of embryos in a multiple pregnancy, by terminating them, until there are two or three embryos remaining - a number that is much less likely to result in extremely preterm delivery. Since it involves abortion, it is not surprising that it can lead to heated, emotional discussions. Although in this post I don't really want to get into the whole abortion debate, I do want to say why I think that selective termination will never be the best answer for multiple pregnancies caused by infertility treatments.

For one thing, whether you are pro-abortion or anti-abortion (or pro-choice or anti-choice), we can all agree that there are many people who, because of their anti-abortion beliefs, will simply never consent to selective termination, and this is probably a sizable proportion of the population. Are we to deny some infertility treatments to that many people because they do not agree to selective termination?

The thing that bothers me the most, though, when people talk about selective termination as a solution for these pregnancies is that it's like closing the barn door after the horse got out. Selective termination after we've caused a pregnancy with, say, five embryos? Wouldn't it be much better to be more careful and do a better job of not making a woman pregnant with quints in the first place? If this requires changes in insurance reimbursement for infertility treatments, then so be it. If this requires better education of couples to assure that they don't have sex when the woman's ovaries are releasing six eggs due to infertility treatment, then lets do that.

But acting as if selective termination of a multiple pregnancy that we have iatrogenically caused is a fine way of dealing with the problem - regardless of your abortion beliefs -is just bass ackwards.

Septuplets

2007-06-17T22:12:00.000-04:00

The birth of two sets of septuplets within hours of each other last week reminded me of the time a couple of years ago when an internist colleague of mine asked me what I thought of the birth of another set of septuplets back then. I sighed and replied, " It's a failure of modern medicine."

That is certainly still true today. Modern treatments for infertility have helped many childless couples conceive, but until we lick this problem of higher order multiple births we cannot consider our work with infertility a success. The septuplets in Arizona were apparently born at about 30 weeks. Most of those kids should do fairly well, although raising six kids at once will still be tremendous undertaking. But the Minnesota septuplets show how truly bad the results of our infertility treatment can be sometimes.

Those kids were born at 22 weeks gestation, weighing between 11 ounces and 19 ounces, or about 330 grams and 570 grams. Personally, I don't usually resuscitate 22 weekers, and I certainly wouldn't go all out on a 330 gram 22 weeker, but when you've got a combination premium/celebrity pregnancy like this, I guess you do some things you wouldn't normally do.

The latest Vermont Oxford Network data shows that the survival chances for a 22 weeker are eight per cent. For a 330 gram 22 weeker the chances are basically nil. The chances of all six surviving, if you figure each one has an eight per cent chance, is 0.00002 percent. The survivors each have at least a 50% chance of having moderate to severe impairment.

Is anybody proud of this? Do the infertility doctors think they're doing a good job with this? Do they realize how much this will affect the lives of these parents and kids? I doubt it, because if they did, I think they would do a better job of preventing such multiple pregnancies. I also think the parents are not fully aware of the risks as well or they would not accept the risk of having quads, quints, or septuplets.

I'm not up on all the latest infertility treatments, but I'm sure we can do a better job of preventing such multiples. In the early days of in vitro fertilization, doctors used to implant 5 or six fertilized eggs into the mother in the hope that one or two would survive. Unfortunately, that meant that occasionally 4 or 5 would survive. Fortunately, I'm pretty sure there are now limits as to how many fertilized eggs are put in. However, we still can get multiples from other types of infertility treatments such as those that cause many eggs to come from the ovary at once, although I suspect that with close monitoring we could tell the couple when too many eggs are ovulating so they shouldn't have sex because of the high risk of multiple births.

Money used to play a role in this, and maybe still does. In the early days of in vitro fertilization, several eggs were put in at once partly because it was cheaper to put 6 eggs in at once versus 3 eggs twice. Of course, the post natal costs of a set of quads or quints dwarfs the money saved by doing one high order implantation versus two lower order ones, but our medical economics system has never been set up to take advantage of those kinds of savings.

I don't think the media helps at all either, making each birth of quints or septuplets into a Good Housekeeping warm and fuzzy moment. It's time the press started treating such high order multiple births like the iatrogenic disasters they are.

Advocates

2007-06-14T22:55:00.000-04:00

Why, my friend wanted to know, would I definitely resuscitate a baby with Down syndrome, who has a near certainty of having an IQ in the severely impaired range, but for a 23 weeks gestation baby, who has a 50% chance of being in the normal range, give parents the choice of whether or not they wanted their baby resuscitated?

I sighed when I heard the question. It came at a time when on my blog, in response to strong advocates for parents of premature babies, I was trying to stick up for the rights of extremely preterm babies by saying it was hard to let them die when you knew a certain percentage of those you let die would have been normal. At the same time I was having on ongoing conversation with my friend, a strong advocate for babies with gestational ages at 23 and 24 weeks, who thinks that all 23 weekers should be resuscitated, regardless. No fair, I thought. I was taking heat from both sides.

But it's a good question, without a readily apparent answer. I told my friend that with 23 weekers you had to be worried about the kids who might get severe cerebral palsy and require total care, which could be a life of suffering for the child and a huge change in the life of the parents. In other words, twenty-three weekers can turn out better than kids with Down syndrome, but they can also turn out a lot worse. I also mentioned that with the legal climate and the history of the Baby Doe rules, we are reluctant to let Down syndrome babies die without resuscitation. My friend was less than overwhelmed by my arguments.

Having thought about it, though, I think there are a couple of other reasons why we treat the Down syndrome kids differently than the earliest premies, even though the premies have a better chance of having a normal outcome than the Down kids. For one thing, Down syndrome kids don't usually require the huge resuscitative measures and months of intensive care that a 23 weeker does.

But perhaps just as importantly, most parents of Down syndrome kids have already had their chance at saying no to having the baby. Most cases of Down syndrome are diagnosed prenatally now, and parents are often given the chance to terminate the pregnancy. Although I haven't personally seen the hard data on this, I've heard it said that 60 to 90% of parents opt to terminate the pregnancy when told the baby has Down syndrome.

It's funny. When last year I said that Down syndrome kids had no chance of having normal intelligence, I was raked over the coals by some of the parents of Down syndrome children. When I speak up for 23 to 24 weekers, though, it seems the opposite side, those in favor of more parental choice regarding resuscitation, are more vocal. Why is this? Where are the parents advocating for the premies and their right to resuscitation? I don't know, but I'll just keep plugging away in the middle.

Oxygen

2007-06-12T18:23:00.000-04:00

Whoever said you can't get too much of a good thing didn't know about neonates and oxygen. We try to keep a premature baby's oxygen saturation - the level of oxygen in their blood - in a certain range, 88% to 94% for example, because not only can too little oxygen be harmful, but also too much can be harmful, especially to the eyes and lungs. We continuously measure the oxygen saturation with a monitor and adjust the amount of oxygen we give the baby based on what the monitor tells us. If the oxygen saturation goes too high or low, an alarm on the monitor goes off to let us know so we can adjust the amount of oxygen we're giving.

Over the past several years we have learned that it's better to keep the baby's oxygen level at a lower range than previously done. We used to keep their oxygen saturations at, say, 92 to 97%, whereas now they might be kept at 88 to 94 % or maybe 85 to 92%, the level varying from NICU to NICU.

There's one problem, though. It can be tough to get the people who adjust the amount of oxygen given, primarily the nurses, to accept that too much oxygen is bad for a baby and that it really is important to keep the oxygen level from going too high. It's pretty easy to get a nurse to increase the amount of oxygen given when a baby's oxygen saturation falls to, say, 80%, but it seems harder to get them to decrease the amount of oxygen given when the saturation is, say, 98%. It's understandable; all our life we're taught how we need enough oxygen. The too much oxygen thing almost goes against our nature.

One way we try to keep the oxygen levels lower is by setting lower the level at which the monitor alarms. If we want to keep the oxygen saturation level below 92%, we would probably set the monitor so it alarms when the saturation goes above 94%. Here, too, we have a problem sometimes with getting the nurses to set the alarm at a lower level that we used to, and this bothers me some. Why do we have trouble getting some of the nursing staff to do this?

It's not because it's not explained to them. A few years ago when we decreased our suggested oxygen saturation range and monitor alarm limits we gave inservices to the nurses explaining why we were doing so, showing them the research that proved it was beneficial. Some nurses caught right on and were very conscientious in adjusting the amount of oxygen given and the alarm limits, but others didn't seem to take it too seriously. My experience is not unique, because an article in the latest Pediatrics shows that in the NICU studied the upper monitor alarm limit was set correctly only 23% of the time, with it usually being set too high.

Why, I wonder, is change so hard for some people? Change can be hard for me, too, but when it's explained to me why a change will be better, I change. Also, if a standing order or policy changes, I follow the new standing order or policy. So why don't some of the nurses follow the new policy of setting the oxygen alarm limits lower? It can drive me a little batty at times.

Please don't take this as a broadside against nurses. Some of them change admirably and want to keep up with the latest information. Also, nurses are hardly the only people who have trouble changing. I know there are some doctors who are set in their ways or are just not conscientious about making certain important changes. But still, it bugs me.

A few years ago I gave one of the inservices explaining why we now wanted to keep the oxygen levels in a baby's blood lower. One of the nurses dozed through most of my presentation, which was short and, hey, not that boring. When my inservice was done, I said,"Okay, now, let's keep those oxygen saturations in the normal range."

The nurse sniffed sarcastically. "Oh, is that what we have to do now?" like it was a totally ridiculously thing to do and a waste of her time. I wanted to kick her behind out the door. We're taking care of babies here, not making widgets, so when a change improves their care, doggone it, we'd better change.

Dreadlocks

2007-06-10T18:15:00.000-04:00

My seven year old great nephew is growing his hair long because he wants to have dreadlocks or cornrows. He's not sure which yet, but he'd better decide fairly soon because his hair is getting pretty long and shaggy. Adopted by my nephew from a former Soviet bloc country several years ago, he'd been born prematurely and spent most of his first year of life in an orphanage. In spite of that rough start, he's a pretty good kid, although he does have some ADHD, and he spends a little more time in the principal's office than a seven year old should. When I heard that he wanted dreadlocks already at the tender age of seven, all I could think was, man, he's going to be a handful as a teenager.

When my nephew and his wife went to pick him up several years ago, they went as part of a group of parents, all of whom were adopting kids. The kids were at different stages of life, and one of them was a 12 year old with poorly controlled epilepsy. The doctors in her country had done all they could, and one of the reasons she was up for adoption was so she could come to America and get better care. That meant, though, saying a permanent good-bye to the foster family that had cared for her for years and was in essence her family. My nephew said the farewell scene was pretty emotional, as you can imagine.

Personally, I don't think I could have done it if I were the adoptive parent. My heart breaks just thinking of tearing a 12 year old away from her family. I think I would have said, look, we'll get her care for her epilepsy in the U.S. and then bring her back after a few months or a year or so. To forever remove her from a family she was attached to at that age? It shouldn't have to happen.

I've written before about my ambivalent feelings towards adoption. It's hard enough to give up a baby for adoption, but a 12 year old? Even though her foster parents weren't her biological parents, they had had her for many years, so it's no surprise it was wrenching to all sides of the adoption.

The things we do to kids sometimes. I'm glad my nephew made it out of there before his first birthday, and I hope he sits still for his dreadlocks.

Unsolicited

2007-06-07T21:39:00.000-04:00

I have some unsolicited advice for John Edwards. Go home, John. Spend some quality time with your wife and kids.

John Edwards, as most of us are aware, is a presidential candidate whose wife has breast cancer that has metastasized to the bone. The condition, as one news source said, is treatable but not curable. I'm not an oncologist but a physician friend tells me that her life span is measured in years, not decades, and probably just a few years.

It just seems to me that if your wife is slowly dying of cancer that you would want to spend those last few years spending time together doing relatively enjoyable things. Campaigning for president does not seem like a great way to spend that time. I don't say this because of any political reasons. I have no strong feelings one way or another about John Edwards as a presidential candidate, but as a human I think he'd be better off doing something else.

It seems that John Edwards especially would get this. They lost a teenage son in an automobile accident several years ago, so you would think that he more than others would realize how precious life and time can be. They also have two young children. Now is the time to spend time with them, not when they are adults and your wife is no longer around.

I realize that this is none of my business, that it is between Edwards and his wife. I have read that she insisted he continue. Maybe campaigning is what they enjoy doing together. Some would say that seeking the presidency is more important than spending time with your dying spouse. I don't think so, though. There are lots of people who could be president of the United States, but there's only one guy who is Elisabeth Edward's husband.

Harassment

2007-06-05T18:17:00.000-04:00

The woman was in active labor and feeling the pain that goes along with it. In the room with her were her husband, an OB resident, and myself. The OB resident rubbed her leg in a reassuring way. That gesture in itself, a brief pat or rub of the lower leg to offer comfort, was not that unusual, but then it got weird. The resident, a man, started rubbing her upper leg, along the inner thigh, going up and down, up and down, getting uncomfortably close to her business area. He acted like he was simply trying to calm her.

The woman looked at her husband with an anxious expression, one that became more anxious as this continued. The husband, looking uncertain as to what to do in this unusual and uncomfortable situation, seemed to be avoiding her looks. Finally the resident stopped the rubbing and the labor story went back to normal.

This happened when I was a third year medical student. If it happened today, I'd haul the resident into the hallway and tell him to knock it off, but I'm sorry to say I didn't do anything about it then. Partly, it was because as a third year student you are pretty low on the totem pole. I mean, this resident would be filling out an evaluation on me - a bad excuse, I know - and he probably would have denied he was doing anything wrong. Partly I didn't do anything because like the husband, I could hardly believe it was happening. Also, this was long before Clarence Hill was confirmed as a Supreme Court justice and sexual harassment came to the fore of America's consciousness.

I'm glad to say that personally I have seen practically no instances of a physician taking sexual advantage of a patient, other than the episode above. Maybe women will tell me otherwise, but I suspect it doesn't happen too often, at least not in the labor and delivery area where I would see it. That's not a surprise to me. No offense to anyone, but a very pregnant, laboring woman is simply neither sexy nor tempting.

Physicians who do take sexual advantage of women must be real scumbags. It's pretty sad that they have to resort to it to get their jollies, because frankly, having an M.D. behind your name gives you a bit of a head start with many women whom you might be trying to impress in a legitimate dating sort of way. I have little sympathy for them if they are caught. Off with their heads, I say, or at least off with their licenses.

Moms

2007-06-03T19:40:00.000-04:00

It was recently Mother's Day. Congratulations to all the moms out there.

I think of all the different kinds of moms there are. There are the moms who are really into it, who read about kids while they are pregnant and know everything they are supposed to do. I think of the teenage single moms pregnant not by plan but by accident of passion. I think of drug using moms, who may love their kids but are simply unable to do right by them.

I think of stepmoms - boy, that's got to be one of the toughest jobs in the world. I think of moms of special needs kids. Although any mom's work is never done, that's especially true for moms of special needs children. I think of working moms, trying to do it all, or maybe shirking either their work or child rearing responsibilities. I think of moms whose husbands died young and had to raise multiple kids by themselves. (Rest in peace, Mom.)

But most of all, I think of three nurses in our unit who would like to be moms but cannot get pregnant. In their 30's, they have been trying for years to conceive, all the while watching babies born to some mothers who barely gave a second thought to getting pregnant. I don't know the details of their infertility, and I don't dare ask. It's such a private thing.

One Mother's Day morning I was leaving work when I saw one of the nurses with infertility problems by herself, and I said to her, "Darcy, I know Mother's Day might be hard for you, but I sure hope that by this time next year you can be a mom, too."

"Oh, I hope so too!" she said, with such earnestness that it showed the pain it must be for her. That was two years ago, and she is still childless. I really don't know what to say to her now.

Parenting

2007-05-31T21:30:00.000-04:00

The three little kids were in the hallway outside the NICU with their grandmother while the mother of their baby sibling was inside preparing for the baby's discharge. The baby had stayed longer than usual because the mother had used cocaine and Protective Services had to check the house out. The kids were getting restless, and as will happen one of them, about a 2 year old, bumped into a smaller one who looked to be about 18 months, who fell on the floor on her bottom. No harm done, no crying. The grandmother, though, went ballistic. "See what you've done now!" she yelled at the 2 year old."Now get into that waiting room like I told you before!"

I couldn't take it. I guess I had seen one too many examples of bad parenting. "Hey," I said gently, "They're just being kids. These things happen."

Grandma didn't back off. "I told her long ago to get into the waiting room. She has to behave."

"Good grief," I replied, "She's just a toddler. You're expecting way too much of her."

"Listen, man," she said, "don't tell me how to raise kids."

"Why not," I shot back, " You clearly don't know how to do it."

"Don't give me any crap, bucko," she snapped.

"Don't give me any guff, lady, or I'll contact Protective Services again and make them take away the kids. With a witch of a mother like you, it's no wonder your daughter turned to cocaine."

Man, it felt good to say that.

**************

But don't worry folks, I didn't really say that. Everything after the second paragraph is fiction. After I said "These things happen," I just walked into the NICU without saying anything else. I'm sure, though, that I'm not the only one who has to grit his teeth to remain quiet when we see examples of bad parenting.

I'll see mothers yelling at kids too small to get it or slapping kids too young to learn from it. I'll see them berate a child for just doing what kids normally do. I hate it, because I think what the child's home life must be like, that it must be a life of fear, at least until the kid gets so jaded he doesn't care anymore. I hate it, because I know that if the child lives with scolding and yelling she'll grow up to be a scolder and yeller. The kids are so little and impressionable, if we could just treat them gently, they would grow up to be gentler.

Is there anything we can really do about it, though? Sadly, I think not. We certainly can't remove kids from their homes for poor parenting skills. We don't have enough good foster homes as it is now. And we can't really mold people's parenting skills in the brief time we have with them. We can try to teach them, but they're probably just going to do what they grew up with anyway, so my nasty comments to such people will have to occur in my head and not in reality.

Punk

2007-05-29T21:22:00.000-04:00

The 16 year old mom had been rushed back to the C-section because of a prolonged drop in the baby's heart rate. After laboring in relative boredom for most of the day, things had suddenly gone into high gear,with little time to explain things to the family. The mother was put under general anesthesia, so the father couldn't go back into the C-section room to see his baby born. After some chaotic hurried moments, the baby was born, and as is typical in these situations, the baby's first cries a few seconds after delivery were met with a collective sigh of relief.

I hadn't needed to do much for the baby, and as I was leaving the delivery area a nurse asked me if I could just let the family know how the baby was. Of course, I said, and went to the labor room where the new father, grandmother, and an aunt were waiting.

I walked into the room to see the grandmother and aunt looking expectantly and nervously at me. Next to them was the baby's father, looking a young 16 years old himself. He wore a skewed baseball cap, an oversize T-shirt, and baggy low slung jeans that didn't bifurcate into legs until about the level of the knees. He didn't even bother to look up when I entered the room but just kept staring at the floor. I sighed internally. Another young punk, I thought, not brought up with proper manners and certainly not prepared for fatherhood.

I told them the baby was fine and congratulated them, telling them the usual happy spiel about a normal newborn. The grandmother inquired about the mother, who was still on the C-section table, while the father remained uncommunicative, almost on the verge of seeming impolite. But then I noticed something wet drip off his cheek unto the floor. I looked a little closer and saw that he was crying, and not just crying but weeping profusely. I had taken his lack of eye contact and speech as a sign of impertinence, when in fact he was overwhelmed with emotion by the situation. He was looking at the floor not because he was a jerk, but probably because he was too overcome to do anything else.

Whether his tears and emotion were of concern for his girlfriend and baby, or joy that everything was going to be fine after the minutes of uncertainty, or of a new realization of the responsibility now upon him, I don't know. But I do know that I had judged too quickly. My heart went out to this young man who a few moments before had somewhat disgusted me. It would be a cliche but true to say that it reminded me I shouldn't judge a book by its cover. Maybe the lesson isn't quite so broad but just that, hey, punks have feelings too.

Beard

2007-05-27T18:54:00.000-04:00

When the bearded lady walked into the NICU, I knew it was time to start blogging again.

Her baby wasn't very sick, just premature enough to require an IV for a few days. I was speaking to her at the baby's bedside about two days after delivery, telling her that her baby was doing well and wouldn't need the IV for more than another day or two. The mother nodded and smiled, seemingly appreciatively. Then she said to me, "I'm going home today." She looked searchingly at me, until I figured out that she was really asking whether her baby could go home today, too. I told her that no, her baby still needed the IV and wasn't quite ready for discharge. She began crying.

I understand that women want to go home with their babies and that it's a hard thing to leave the hospital without your baby. I understand their disappointment and anticipate it, often saying to them "It's hard to go home without your baby, isn't it." But it's still a little puzzling when a baby is born several weeks prematurely, is in the NICU, and has an IV in place, why doesn't it even cross the mother's mind that her baby might not be ready to go home?

I don't think it had anything to do with her beard, which was pretty impressive. It wasn't so long, more like just a two or three day stubble, but it's distribution was so wide, on her cheeks and chin and neck and upper lip, as widely distributed as a man's beard. For some reason, I've seen a lot of facial hair on women the past few years, and it's usually just a moustache or some on the chin, often like sort of a bad goatee. Not so here; this woman was unfortunate enough to have a macho five o'clock shadow.

I don't say this to mock her. I know it can be a real problem, especially if a woman has polycystic ovary syndrome. But it can be pretty striking, and for better or for worse, was the most memorable thing about this mother.

Hiatus

2007-03-29T11:06:00.003-04:00

Dear readers, I am going to take a break from blogging for awhile, because things are just getting a little too weird. As many of you know, an anonymous "troll" (what is the derivation of that term?), supposedly an ER doctor, has been leaving some comments on my blog that are insulting to other commenters. I'm not thinking happy thoughts about that troll now, but neither am I terribly pleased with the people who take the bait and respond to him, thereby contributing to an ongoing cycle of insults. As Sarabeth said, don't feed the troll.

But it is not the troll, per se, who is making me stop blogging, but rather talk of legal action against me. Someone was kind enough to send me some of the comments written on the Narofat yahoogroupsdotcom site. In those comments, one person speaks of the possibility of legal action against me, and the person replying, although she doesn't say anything about legal action against me, gives a less than charitable reply about me. (The comment is on my Thogger post if you want to read it.)

That brings to mind some questions. First of all, what is the Narof group? What do the letters stand for? And what have I done to draw such treatment from these people? I may have disagreed with them in the past, but I think I did so without malice. Personally, I don't think they have a case for legal action against me, but I'm not a lawyer and don't want to have to retain one. It seems to me that if someone doesn't like what's written on my blog there is an easier thing to do than threaten legal action - simply don't visit my site.

If it were just the troll, I could probably handle it by deleting comments or enabling comment moderation, something I will have to strongly consider if I resume blogging. That will change the character of the blog, though, since it would frequently be a day or more after posts are published before I could get to the comments. The free exchange of ideas would suffer. But speaking of legal action raises the stakes a notch. I like blogging, but hey, it's just a blog.

I'm not sure how long a break I'll take: maybe a few days, maybe a few weeks or months. I am sorry to have to do it, because I enjoy blogging, and judging from my comments many of the readers enjoy this blog and the discussions it engenders. I appreciate the majority of commenters who leave thoughtful and civil comments. I haven't minded when people disagree with me, but I can live without personal insults of me or other commenters and legal action. Like I said, it's just a blog.

I'll have to find something to do with my time if I don't blog. Maybe I'll get a dog. Hey, that rhymes....

Zoo

2007-03-27T18:40:00.000-04:00

I wondered why the people from the lab were in the NICU. "Oh, we just want to see the little babies," they said. For crying out loud, I thought, we're not a zoo.

At one time, though, premature babies were displayed as if they were zoo animals. A physician named Budin, one of the inventors of the incubator, displayed premature babies at the Berlin Exposition of 1896 and in subsequent exhibitions. A student of his, Dr. Martin Couney, also displayed premature neonates at exhibitions, including as late as the 1939 New York World's Fair. It sounds pretty trashy to use babies in such a way, but before we judge them too harshly, realize that Budin did studies showing that survival of premies weighing less than 2000 grams was improved if their rectal temperature was kept normal, a significant advance for the time, and Couney, although a showman, is said to have cared for 80,000 premature infants during a 40 year career.

Frankly, I think exhibits of premature neonates would still be popular at fairs, since it's not uncommon for hospital workers and visitors to want to see them. This is especially true if the babies are a set of multiples, like triplets or quadruplets, making them minor celebrities. It's also a problem if one of the parents is a hospital employee. I remember when an OB resident had her baby; there were OB residents making a steady stream into and out of the NICU.

Earlier in my career I wasn't sure how to handle requests from friends in the hospital who wanted to see the babies. I'd let them see them sometimes. I even took my mother around our NICU once, to show her the kids I worked with. (Not a medical person herself, she couldn't wait to get out of there.) But now I have an easier time refusing their requests. For one thing, I can claim that HIPAA doesn't allow it, although I'm not sure if that is really true, and for another thing, I'm just grumpier than I used to be and don't care if people are miffed at me for not letting them in. Also, I truly do worry about infections. The NICU is no place for extraneous people, people who might be incubating a cold and not know it.

I've never really asked parents how they feel about strangers looking at their kids. I suppose different people would have different thoughts. Most parents are proud to show off their baby, but if their kid is struggling for life on a ventilator, making him an exhibit isn't high on their list of priorities. The exception is if you ask the parents if you can show their baby to students as a teaching case. For example, a baby might have an omphalocoele, a defect where part of the abdominal contents are outside the baby instead of inside him, or some other unusual finding that students won't get to see often. If the parents aren't around, I simply show the baby to the students, but if the parents are there, it's only right to ask for their permission. They rarely refuse it.

Thogger

2007-03-25T17:05:00.000-04:00

Alllllrright!!

I've been chosen as a Thogger by my web friend Ex Utero, as well as by Magpie. Thank you, thank you. A Thogger is a thinking blog, or a blog that makes you think, and it's a new meme started by Dr. John Crippen. Ex utero chose five blogs that make him think, and now it's my turn to do the same. Here's my dirty little secret, though. Even though I'm a blogger, I don't really read blogs that much. I would like to, but hey, life interferes sometimes. Anyway, here's five blogs I read that make me think:

1. Tales from the Womb by Ex Utero. I know, he nominated me and now I'm nominating him, but it's true that I read his blog more than any other. It's an eclectic mix of fiction and neonatology, with the occasional post about Neanderthals and Komodo dragons thrown in. (Note to Ex: I really like the Neanderthal and dragon stuff.) I'm looking forward to raising a glass with him at a conference this spring.

2. Dream Mom. Beautifully written by a mother of a special needs child, it speaks of her love for her son while still acknowledging the burden it can be caring for him.

3. Fat Doctor. She makes me laugh, and I like to laugh. When composing a description of herself for a dating service, she entitled it "Never been incarcerated." Need I say more?

4. Flea. Doesn't everyone read Flea? Or at least look at his pictures?

5. Barbados Butterfly, awarded posthumously, or postblogumously. A surgical resident or registrar in Australia (actually, I'm not really sure what a registrar is), she was the first person ever to leave a comment on my blog. Sadly, she had to shut her blog down because her hospital didn't like it. Barb, I hope you're reading this and that life is good down under.

There are many, many more I'd like to mention, but the meme limits us to five. Maybe some other time!

Balance

2007-03-23T10:03:00.000-04:00

Following my "Village" post of several days ago, there were several comments that spoke of the suffering of children in NICU's. If read with other comments previously published in my blog, someone who didn't know better might think that NICU's were nothing but houses of suffering for hopeless children and that neonatologists were mad scientists who delighted in tormenting them. I exaggerate, but sometimes comments are pretty critical of neonatology, which can bother me and, I'm sure, some of the NICU nurses who read this blog and who, like me, are trying to do their best for these children. I think it is only fair, then, that in this post I give a more balanced view of the NICU.

First of all, a balanced view of neonatology and NICU's would acknowledge that more of our kids than we would like turn out to have less than optimal outcomes. Cognitive deficits seem to be especially common, and other entities like cerebral palsy and learning disabilities are more common than we would like. A balanced view can also understand how people whose NICU graduates have had bad outcomes may be frustrated by that and want to be sure that parents of potential premies hear the whole truth. But a balanced view would also acknowledge that not every micropremie has a bad outcome. Many turn out to be normal, and many of those who are not normal are still worthwhile human beings who bring joy to their families.

A balanced view would also recognize that when we discuss outcomes data with parents we must include everything. The Epicure study is often mentioned by commenters on this blog. It is fair to discuss that, but it's also fair to note that in the Epicure study too few prenatal steroids and too many postnatal steroids were used, and the survival rates in that study were very low, much lower than current Vermont Oxford Network data. Is the Epicure study indicative of how today's kids will turn out, or will they be more like the children from the University of Iowa's NICU, which claims much better survival and disability rates? I don't know, but I have to consider many sources of data when discussing possible outcomes with parents.

As for resuscitating babies of extremely low gestations, a balanced view would recognize that there are some very tough decisions to be made at that time and that it is not at all easy to decide which kids to resuscitate. Far from being uncaring people who resuscitate kids without regard for their outcomes or parents' wishes, most neonatologists struggle with this. Every time I resuscitate a 23 weeker I wonder if I'm doing the right thing. Will this be a good outcome? A good enough outcome? What is a good enough outcome? Also, please realize that I don't want to save children who will live a life of suffering, but neither do I want to discriminate against the handicapped, and there is a fine line between the two.

As far as pain and suffering goes in the NICU, does it occur? Of course it does, like in any ICU, adult or pediatric, but that doesn't mean that the life of a premature baby in the NICU is one suffering moment after another. We have made tremendous strides in pain management, although we also have a long way to go. Many more kids are treated with pain meds than in the past. However, in spite of ooodles of research in this area, we still don't have a great pain scoring system for premature children, and we need more research into when pain meds do more good than harm in terms of developmental outcomes. Discomfort and pain are associated with being on a ventilator with an endotracheal tube in place, yes, but it is also not unusual for me to examine a ventilated baby and have him yawn at me as if to say, hey, can I get back to my nap now? And when kids do suffer, although we don't like it that they do, we have to recognize what we are trying to accomplish: we are trying to preserve and give them life, that most precious of commodities.

Let me close this post by saying what I have said before. We resuscitate and care for these kids because the parents want us to. Comments on previous posts give examples of neonatologists who kept treating preterm babies against their parents' wishes, but in my experience those cases are by far the exception more than the rule. It is much more common for a parent to want to continue treatment in a hopeless situation than it is for the neonatologist. I remember one case of a baby born too soon whose mother wanted me to continue the ventilator even after the baby's heart beat had stopped and I had pronounced him dead. I recognize the reasons for that mother's sorrow and desire to keep the ventilator going; please recognize that I'm just trying hard to do the right thing.

Schlachthaus

2007-03-21T15:02:00.000-04:00

While watching news about the fourth anniversary of the United States' invasion of Iraq, I saw some interesting statistics on CNN. Approximately 3,200 U.S soldiers have been killed in the conflict in Iraq. (All the numbers in this post are approximate.) An additional 24,000 have been wounded, 10,000 of them seriously. They didn't define what "seriously" meant, but I imagine it includes things like loss of limbs and head injuries that permanently change the person's mental capabilities.

This is a large number of deaths and injuries, and whether we are in favor of or against the Iraq war, we wish that none of them had to occur. But I am struck by how little those numbers are when compared to conflicts of the past. For example, in all the years of the Vietnam war, 56,000 American troops were killed. The Vietnamese war lasted two to three times as long as the Iraq war has so far, but even if you triple the number of Iraq deaths, the number killed in Vietnam dwarfs them, although the calculus gets a little complex when you realize that many of the soldiers seriously wounded in Iraq would have died in Vietnam.

It's when you move on to other wars of the past that the numbers really get staggering. In World War I, a war that the U.S. was in for only a little more than a year, 116,000 American soldiers died, and we lost 400,000 soldiers in World War II. Losses of other countries in World War II were far greater, with Russia losing 7,500,000 casualties and Germany 3,500,000.

I in no way mean to be minimizing or downplaying the losses of the U.S. in Iraq. Every one of those 3,200 dead left behind loved ones and potential unfulfilled. Rather, I am blown away by how horrible it must have been in World Wars I and II when the casualty reports came in. I remember as a preteen during the Vietnam war reading about the troops killed, which seemed to average about 100 to 200 per week, more, of course, during times like the Tet offensive. Nearly every family knew of another family, perhaps only peripherally, that had lost a loved one in the war. But think of the World Wars, with so many more casualties concentrated into shorter time periods. The psychological burden must have been incredible.

I recently read Slaughterhouse Five by Kurt Vonnegut. Personally, I didn't think it was that great of a book, although I know many others don't share that opinion. It pointed out some horrible statistics about one day losses during World War II. The atomic bombing of Hiroshima killed 70,000 to 100,000 people, the Nagasaki bomb about 40,000. But what many people probably do not realize is that earlier in World War II the fire bombing of Dresden by the Allies, the central event of Slaughterhouse Five, killed 130,000 people in one day, more than were killed by either atomic bomb. And these bombs were all dropped by the good guys, us, on predominantly civilian targets.

I think of the sorrow I see in a family when one baby dies. Anyone who reads the comments on my blog knows that these single losses change the parents' lives forever. When you multiply that sorrow by the numbers of casualties in wars, it becomes truly unfathomable. War must always be a last resort for solving conflicts.

Guilt

2007-03-19T14:16:00.000-04:00

A physician acquaintance was telling me about an episode that happened more than ten years ago. He was providing the OB care for a pregnant physician friend. At one checkup his friend had mildly elevated blood pressure. They debated whether to work it up further but it was mild and transient, so they decided to just have her come back in one week. To make a long story short, his friend showed up six days later with a dead fetus.

Needless to say, my acquaintance felt terrible. You would feel bad about that even if your patient were a stranger, but to have it happen with a friend magnifies the feeling. His feeling of guilt persisted even after quality assurance reviews found no fault with his actions, and even now, more than a decade later, it was hard for him to talk about. I couldn't help but think, though, that even though the physician's pain was great. the mother's must have been much worse. She not only had the pain of the loss of her child, but she too must have had a fair amount of guilt.

I am told, and have at times observed it myself, that mothers of babies with problems have a lot of guilt, often without rational basis. I can imagine them thinking to themselves, did I wipe myself wrong, causing a bladder infection that set off preterm labor? Did my water break at 26 weeks gestation because I had sex last night? Did I come to the hospital soon enough? Should I have used a different obstetrician? Even though the mother may know in her head that a premature birth, for example, was not her fault, she can still have trouble shaking that guilty feeling.

Like all doctors, I have made some mistakes. When I do, I usually determine to learn from it, or rationalize it, or use some other internal defense mechanism to soothe myself. Time, too, has a way of lessening your guilt. But if a mother feels guilty about causing preterm labor and has a child who is an NICU graduate with deficits, is that a constant reminder of her thoughts of guilt? Or does the rational side of her, the one that knows in her head that the prematurity was not her fault, eventually prevail? Does the joy of her child drown out those guilty feelings? If a child is more severely impaired, are the guilty feelings worse? Do they last longer?

I'm not sure what the natural history of guilt is, and I'm hoping that I don't have so much that I find out. I wonder if it has stages, like Kubler-Ross's five stages of grieving. I think we just have to remain aware of it in mothers' lives, because they don't seem to talk about it much, at least not with me. Maybe it's easier for them to discuss it with the nurses, who are in general less intimidating and almost always female.

P.S. It seems that somewhere in this post there should be a phrase about a Catholic upbringing or Jewish mother, but I just couldn't figure out where to fit it in.

Sections

2007-03-16T13:21:00.000-04:00

Perhaps it's fitting that this week containing the Ides of March also brought to my attention two articles about cesarean sections, the operation Julius Caesar was supposedly born by and to which he lent his name. The first article, called "Cesarean delivery and the Risk Benefit Calculus", by Drs. J.Ecker and F. Frigoletto of Boston, is in the March 1 New England Journal of Medicine. It gives a brief review of cesarean sections and includes some fun facts about them.

In 1937, the percentage of deliveries done via C-section at Boston City Hospital was 3%. In 2005, national rates of C-section are slightly more than 30%. In 1937, 6% of primiparous women - women having their first baby - who delivered via C-section died following the surgery. Fortunately, the mortality rate following C-section now is much less. I'm not sure of the exact number, but it's something like one in every several thousand sections. The authors suggest some reasons for the increased rate of C-sections, including a decline in the number of vaginal breech births - a C-section is nearly always done now in such deliveries; an increased number of multiple gestations (twins and triplets, etc.); decreased numbers of forceps and vacuum deliveries; and lower rates of vaginal births in women who previously had C-sections.

Anecdotally, fifteen to twenty years ago there seemed to be a big emphasis among obstetricians on trying to decrease the rates of cesarean sections, and I simply don't see that attitude any more. I don't blame my obstetric colleagues, because they have a pretty tough job. I just think that with newer data showing harm after breech vaginal deliveries and vaginal deliveries following C-sections, a relatively high rate of sections is simply accepted as a cost of decreasing neonatal injuries.

Speaking of neonates, the second article I noticed is in the March Journal of Pediatrics. The article, by a group from Italy, shows that the incidence of pneumothorax - a collapsed lung - in neonates is greater following cesarean sections than it is following vaginal deliveries. Also, in term babies delivered via C-section, the incidence of pneumothorax is greatest for babies born at 37 weeks, less for those born at 38 weeks, and even less for those born at 39 weeks. None of this will greatly surprise neonatologists. We can pretty much tell you from personal experience that the chance of a baby having respiratory problems is greatest following a C-section not preceded by labor, less if the C-section had labor preceding it, and even less following vaginal birth; and if born via C-section, the more mature the baby is, without going post-term, the better his chances of not having breathing problems.

Tough questions regarding C-sections come when a very premature baby, say at 23 to 24 weeks, needs to be delivered. Given the baby's lower chances of survival, is it justified to put the mother through the greater risk of a C-section versus vaginal delivery if the baby's condition warrants immediate delivery? I'll let my OB friends make that call - most of them seem willing to do C-sections at 24 weeks gestation but less so at 23 weeks - but would like to point out that when 30% of all deliveries are done via C-section, nearly every woman knows one or more persons who have had one and did fine, so it's tough to convince those moms of the added risks of a C-section versus vaginal delivery. I know, a C-section at 23 weeks has more risks than one at term, but still, the moms will usually gladly accept a greater risk to themselves if it means any advantage for their child.

Trans

2007-03-14T15:02:00.000-04:00

You may have heard that New York City will ban the use of trans fats in their restaurants, I think beginning July 1, and that other municipalities are considering following suit. Trans fats are those man made, partially hydrogenated fats that are terrible for your cardiovascular health, so bad, in fact, that the American Heart Association recommends you eat no more than 2 grams per day of them. They are found in foods that are deep fried, which some people say taste better when fried with trans fats versus other fats, and in commercially made pastries, because the trans fats make them stay moister for longer.

Should New York City and other communities be protecting their citizens by not letting them eat trans fats? It's an interesting question. It doesn't matter to me personally, because I don't eat that kind of stuff, but there are many who would say, hey, let me decide what is too bad for me to eat. Trans fats are just one of many substances that are bad for us, and other substances such as cigarettes and alcohol are perfectly legal. I guess that after the failure of Prohibition no one wanted to even think about banning alcohol again.

The argument for banning trans fats, instead of allowing individuals the right to harm themselves as they see fit, is that the state, or government, has an interest in keeping its people healthy because the state pays for much of the medical care of people. To the state, fewer trans fats means fewer Medicare payments for heart attacks and bypass surgery and so on. It's sort of like the old argument about whether the state can require motorcycle riders to wear helmets or not. Motorcyclists want to let their hair blow free; the state wants to pay less for rehabilitation of people with head injuries.

I'm pretty certain we won't come to consensus in this post or its comments about what is the right thing here, but if we're talking about banning bad foods, I think we really have to look at super sized soft drinks. When I was a kid, if you went to a hamburger joint and ordered a large Coke, you would get maybe a 16 ounce drink. Now a large must contain well over 20 ounces, and if you "biggie size" your order, the drink could serve a small family by itself. And let's not even talk about the Big Gulp from 7-elevens. How big are those things, anyway? 32 ounces? 48? Considering that a 12 ounce can of pop has the equivalent of about 14 teaspoons of sugar in it, soft drinks must be a huge contributor to the nearly endemic obesity occurring now. Fats get a lot of the attention when we talk about obesity, but these huge amounts of simple carbohydrates can be just as bad.

Personally, I don't mind it if the government bans trans fats or soft drinks in schools or sets maximum sizes for servings of pop, because we humans have shown time and again that rather than take care of ourselves, we would prefer to eat, drink, and smoke ourselves to death. But let me leave you with one final thought. If the government bans trans fats and saves money because of lower costs for cardiovascular care, won't it just have to spend more money on Social Security for the people who are living longer, and then eventually even more money on whatever disease they die from instead of heart disease, like maybe cancer? Just wondering....

P.S. Check out the latest Pediatric Grand Rounds.

Relationships

2007-03-09T13:50:00.000-05:00

A young lady I know recently broke up with her boyfriend. It was a pretty serious relationship; they had become engaged several months ago, but she broke the engagement after a few months and then recently broke up with him completely. I'm sure it was a rough time emotionally for both of them. They are nice people, but as everyone is saying, it's better they found this out now rather than after they were married.

I recently saw an email from her in which she said she was bitter, and I asked her mother why she was bitter. After all, she was the one who broke the relationship off, not him. Her mother defended her, saying she was bitter because he didn't live up to her expectations. The mother said she understood her daughter's bitterness completely. Sensing a bit of a male-female, Mars-Venus kind of thing, I chose not to pursue the subject further.

But is it really fair to be bitter about a person not turning out to be what you wanted them to be? Disappointed maybe, but bitter? Isn't it more like you're just two different people not right for each other? Or, as Dave Mason sang, there ain't no good guy, there ain't no bad guy, there's only you and me and we just disagree.

Breaking up can be tough on a person. I know, because I did it several times when I was younger before finally getting married. Every time a relationship ends there is some sadness, even if you know it's the right thing to do, because there are always some good things about the relationship and other person that you will miss. I guess these failed relationships are supposed to make you wiser, but they just seemed to make me more depressed.

My siblings all got married when they were young, like age 20 or 21. I got married when I was several years older and felt quite smug about it, figuring that it was better to really develop as a person by yourself before getting married. But now I'm not so sure. My siblings have all had good marriages that have continued for years and years. They also didn't have the down effect of a number of failed relationships prior to marriage. If someone asked me several years ago when is the best age to get married, I would have said at age 25 to 30, but now I'd simply say, get married when you find the right person, whether that's at age 20 or 30 or whenever.

I wish I could somehow impart what I've learned about relationships to my own kids so they wouldn't have to make the same mistakes I did. But that would require that I can figure out just what it is I've learned. Also, some things you just have to find out by yourself.

Dismemberment

2007-03-07T19:21:00.000-05:00

By now you've probably seen the national story about the man whose wife was missing for three weeks and subsequently found dead. Her torso was found in their garage and other parts of her body were scattered around a nearby park. Her husband, guilty of the crime, ran away to a northern woods and was arrested there, suffering from frostbite and hypothermia after spending the night outside without a jacket or boots.

Several things struck me about the case. First of all, why is it such big news? I don't mean to sound macabre, but don't people kill their spouses all the time? The suburban woman was white and fairly good looking. I can't help but wonder how much attention would have been paid if she had been an inner city black, or even a less attractive woman.

But the part that most piqued my interest was the heading on one story that read something like "Her dismemberment worse than her death." Really? Is she more dead because her arms and legs were cut off following her murder? Do you think she cared that she was dismembered following her death?

Our culture is pretty picky about the care of corpses. If a body is handled improperly, the family can become very upset. I don't fully understand it. Don't get me wrong - I realize that mutilation and dismemberment of a corpse show significant pathology in the perpetrator, but why do other people care so much? I don't think there's much in religion that makes it important that a dead body is kept whole. If you're Christian and believe in the eventual resurrection of the dead, well, a God that can raise people from the dead is surely powerful enough to put a couple of arms and legs back on the body. If you're Hindu, for example, the body is cremated anyway. And if you're atheist, it's just a body, a mass of dead protoplasm.

We run into this attitude sometimes when requesting consent for an autopsy. I can understand parents feeling squeamish about the thought of their child's body being cut open and so on, but I also think that when you really think about it, people can realize that it doesn't matter to the dead child. Sometimes it's just too hard, though, or the death is too fresh. I've had parents say to me sometimes when declining permission for an autopsy, "He's been through enough already."

It sounds like the dismembering guy in the above story will spend the rest of his life in jail. If I'm not mistaken, his state does not have the death penalty. The woman's family will get over the body mutilation. A far greater tragedy is that the couple's two young children have suddenly lost both their parents.

Village

2007-03-05T11:04:00.000-05:00

When Hillary Clinton first published her book It Takes a Village, I was a bit suspicious of it. It's not that I'm opposed to a child having other influences besides his or her immediate family, because that can be beneficial. I was concerned, though, that the book might deemphasize the role of the nuclear family because the whole village was there for the child. ( I didn't actually read any of the book. I just assumed what its content was.)

Lately, though, some comments on my blog have me wondering if the village concept of raising a child could be useful in some special situations. I think particularly of severely impaired children, children who can really be a burden on their families. These kids can take a tremendous toll on a family, perhaps leaving them with inadequate time for their siblings or maybe leading to marital strife and divorce. If we had a more supportive network for the families, if we shared more of their burden, then life might be better for all.

This is relevant to the issue of whether to resuscitate extremely preterm babies or not. Let's face it: The reason some people don't want their, or perhaps other's, very premature kids resuscitated isn't because they are afraid the baby might die; he's going to do that anyway if not resuscitated. The big concern is that he might turn out to be severely impaired. He could develop severe cerebral palsy, leaving him unable to walk or talk and incontinent even as an adult - and leaving the family with a life completely different than they had ever imagined. If all extremely preterm babies when resuscitated would either die or turn out normal (or perhaps very mildly impaired), we wouldn't have much of a discussion about resuscitating them. We'd go for it on every one. It's the possible burden of that severely impaired child that gives us pause.

Some may say that one of the reasons parents don't want their tiny babies resuscitated is not because they are afraid of caring for them but because they don't want to see them suffer. This is a legitimate point, but when parents are first thinking of this, in the delivery room with mom in preterm labor or with ruptured membranes, I'm guessing that it's the care of a severely impaired child more than its suffering that influences them.

So if society wants us to resuscitate babies even when they have a significant risk of having impairments - and if you look at the Baby Doe rules or the Born Alive act, society does seem to want us to do so - then society should ante up and make it easier for families with such children. And I'm not talking about a little help like some supplemental income. I'm talking about a lot of help, help with taking the impaired child into your home for weekends or weeknights, help with changing his diaper when he's 16 years old, help with controlling his emotional outbursts, help with calming him when he's crying from reflux heartburn. I'm talking about help that would truly give the family some respite and make their life better, day in and day out, and week in and week out.

I don't see society forming true village support for impaired kids any time soon. Talk to parents of such children; they are lucky to find someone to take care of them one or two weekends a year so mom and dad can get away by themselves for a break. I don't hear anyone clamoring to raise taxes so we have more money for services for these kids. A child's problems are the family's burden and will remain so for a long time. We will continue to not resuscitate some kids who would have turned out normal because we are afraid they might not be.

Caricature

2007-03-02T12:38:00.000-05:00

While working out the other day I saw part of a movie called "John Q." It stars Denzel Washington as a father of a child who needs a heart transplant but can't get one either because they have no insurance or because their HMO has turned the request down. (Like I said, I only saw part of the movie.) In frustration the Denzel character takes a bunch of people hostage in the hospital and threatens to start killing them unless his son is put on the transplant list and approved for the transplant.

Like many movies about medicine or health care, the movie is more caricature than realistic portrayal. The protagonist, even though he's holding hostages at gunpoint and has threatened to kill them, is widely considered to be a good guy, sort of a folk hero, even by some of the hostages. Yeah, right. The hospital administrator is cold and heartless, and doctors in HMO's are accused of denying care to people so they can get bigger bonuses. In reality, HMO's might have some problems, but the vast majority of HMO doctors practice ethically and care for patients like they should.

The real fallacy of the movie, though, is that in real life Denzel's son could have qualified for a program called Children's Special Health Care Services (CSHCS), which would have paid for his transplant. Formerly called the Crippled Children's program - you can see why they changed the name - the program was founded back in the 1930's to pay for medical care for children with chronic conditions that require medical specialty care. Different states may call it different names and run it in different ways, but in our state many, many diagnoses are covered, such as cerebral palsy, leukemia and other malignancies, bronchopulmonary dysplasia, and congenital heart disease. The cost for it varies according to the families' finances. It's free for the very poor but has monthly co-payments for others, according to their ability to pay. Relatively few people know about it, but in real life the hospital's finance department would have helped Denzel's family sign up for it.

Since we're talking about programs with complicated initials for names, I am reminded of SCHIP: States Children's Health Insurance Program. This is a federally funded program that allows families too rich for Medicaid but too poor to buy private insurance to get health insurance for their children at greatly reduced rates. It has been a success the last few years, providing health insurance for millions of children of the working poor. It's not the answer for all the uninsured people in the U.S., but it's a start. Unfortunately, in the latest budget proposal the Bush administration is proposing only $5 billion to cover the program, which is several billion dollars short of what states need to cover it at its current levels.

I finished my workout before the end of the movie. I'm not sure how it ends, but suffice it to say that things weren't looking too promising for the health of the Denzel Washington character. Taking people hostage doesn't pay. Talking to knowledgeable people about different helpful programs, although a lot less exciting and entertaining, does.

Blue

2007-02-26T19:40:00.000-05:00

I listened to the pulsating, percussive music of the Blue Man group as they pounded on xylophone-like instruments. Each key was attached to a tube of a different length and when struck with a paddle gave out a sort of melodic thunking tone. When matched with the expressionless antics of the Blue Men, it was pure entertainment, entertainment only for the sake of itself, and I was thoroughly enjoying it.

In the midst of it, though, somehow my mind pulled me back to two days earlier and a 23 weeker in the NICU. He weighed barely more than 500 grams and was trying to die. After one and a half days of efforts by my partners and me, I was willing to let him succeed at it. We had tried everything. On the oscillator ventilator, his pH, a measure of the amount of acid in the blood, was less than 7.0, a level incompatible with life if it continued for long. I switched him to a conventional ventilator, thinking he couldn't do worse on it. I was wrong.

Mother, though, wasn't ready to have him die. Eighteen and single, she was terrified and trying her best to deny the situation. I gently suggested she come to the NICU and hold her baby, telling her that many mothers regret it later if they don't take the opportunity to do so. I also suggested that we might want to take him off the ventilator and have him in a private room with her while he died. The thought of it - the entire situation, really - was more than she could bear. At one point in our conversation, without saying a word she picked up the phone and dialed it. She spoke a few words into it and then handed it to me. " Who is this," I asked before taking the phone. "My granny," she replied.

Many people in the comments section of this blog have written about rights of parents and how they should be kept informed and given options about their babies' care. I agree. I like it when parents are interested and knowledgeable, or at least make an attempt to be. But we must also acknowledge that some parents are unable or unwilling to be their child's advocate, too scared or immature or somehow psychologically or emotionally incapable of doing the right thing. Who, then, should be the baby's advocate? We can quibble about who it should be, but in reality it is me.

Late in the afternoon mom came around and held her baby a good long while as he passed away. Her family and the baby's father came to be with her and in the end it was the best we and they could do with a bad situation. An aunt thanked me and even offered words of comfort to me, saying she knew we did everything we could.

Vibrations from a huge bass drum rocked me out of my reverie. A Blue Man was hitting the drum with the biggest beater I have ever seen. Another Blue Man was drumming on what looked like plumbing pipes, and the third Blue Man was eyeing giant rolls of toilet paper that would soon come cascading down over the crowd. The 23 weeker was out of my mind, and I was glad. It's not that I don't like my job. It's just that I like being off and having fun more.

Woof

2007-02-21T08:42:00.000-05:00

I counted the people in the delivery room. There were the laboring woman, her sister, and her mother; the obstetrician and OB resident; the OB nurse; two medical students; one or two nursing students; and myself and the NICU nurse, all for a term baby with mild heart rate decelerations who turned out to be fine.

There was a time, not that long ago, when even fathers of the baby were not allowed into the delivery rooms. About 30 to 40 years ago hospitals gradually and begrudgingly began to allow dads in. I know one hospital that only allowed fathers into the delivery room if they were married to the mother. I don't know whether this resulted from a puritanical mindset or a desire to make the dad do right by mother. There was a time, too, when dads could only be in the delivery room if they had gone to prenatal classes. Hospitals seemed to use any excuse they could to keep family members out.

Now, though, the pendulum has swung the other way. Our hospital lets just about any one in the delivery room that the mother wants, as long as it doesn't get crowded. It's not unusual to have 3 or 4 family members in the delivery room. Personally, I don't mind this. They are usually well behaved, and it's certainly much preferable to keeping people out at all costs.

I think, though, that maybe it's time to take things to the next step: we should allow family pets in the delivery room. We wouldn't have to do it all at once. We could begin with dogs - if people are uncomfortable with the idea, perhaps we could require a puppy prenatal class initially - and proceed to cats. Eventually, if things work out, we could allow ferrets and so on in the delivery room. It may sound strange, but think what a comfort a beloved family dog or cat could be to an anxious, laboring mother.

They could be useful in another way, too. In this day and age where anyone can cut the umbilical cord - not only fathers but grandparents, friends, aunts, uncles, first cousins once removed, anyone but the obstetrician - why not let the dog do it? You wouldn't even need a scissors. The dog could bite the cord, like they do in nature. (Just don't let him get too close to the placenta or it might be gone!) Hey, a dog's mouth is cleaner than a human's.

P.S. I'm going on vacation the next five days. Look for my next post on about February 26.

Confidence

2007-02-15T19:45:00.000-05:00

She walked into the NICU with a slow gait, her head bowed, and not making eye contact with anyone. When I began talking to her she answered in short, quiet phrases. A former heroin and methadone addict whose other children had been removed from her custody, her body language and demeanor practically screamed "I have no self confidence."

And why should she? Unemployed herself, she was walking into a room full of productive, gainfully employed people. Her mothering skills were thought to be so marginal that she had to have Protective Services check her out before she could take her baby home. Everyone in the NICU knew that, and she knew they knew it. It was no wonder she felt insecure.

As I talked to her about normal baby things - feedings, car seats, and so on - she began to open up and talk more. She seemed very nice and concerned about her baby and asked appropriate questions. I also noticed that her hair, with the coarse texture typical of many African Americans, was beautifully woven into fine braids, something that took no small amount of time and effort to do. Could this attention to her appearance be a sign that she was now going to take better care of herself and her baby?

A little later I talked to another mother, a 17 year old first time mother. Her own mother had lost custody of her long before because of incompetence, and for the last three years she had lived with her aunt and uncle. Now, though, just after delivering her baby, they had kicked her out of the home, because they had one rule: she couldn't have any kids. The uncle might have been swayed to take her back, but according to our social worker the aunt had nothing good to say about her. Protective Services was in the process of trying to find a placement where she and her baby could go together. She, too, had body language that almost said "Kick me, I have low self esteem," which is hardly a surprise, given her history.

Two mothers, both with sad histories. I couldn't help but feel a little cautious optimism about the first one, because it seemed that maybe, just maybe, she had put her problems behind her. But the second one was just discouraging. With role models like hers, it would take a near miracle for her and her child to turn out better than the rest of her family.

Outcomes II

2007-02-13T15:10:00.000-05:00

I can't get off my mind some of the comments made a few weeks ago about the outcomes of very premature babies, mostly in response to my posts Outcomes and Ignored. (There's been similar discussion recently at Tales From the Womb.) Specifically, I think of the comments made by mothers of some ex-premies who had very bad outcomes. Terri w/2 has a 21 year old with severe impairments; Helen Harrison has a 31 year old with hydrocephalus, cerebral palsy, and mental retardation. Both mothers advocate that realistic evidence be given to prospective and new parents of very premature neonates and that parents have a real choice in whether to resuscitate their babies or continue treatment when the outlook is very grim. I think they believe the neonatology establishment in general is too optimistic about outcomes and too aggressive in saving tiny babies.

As someone who takes care of tiny babies for a living, my first reaction is to be defensive, but that's not really fair. I think of what it would be like to have a child with devastating impairments. It is a huge burden, not only the daily grind of their immediate care, but also the fear of what will happen when the parents are no longer there to care for them. We may be tempted to say that the parents think it's all about themselves, and their own desire for an easier life, but I believe them when they say one of the hardest things is to see their child suffer, suffer through things like endless shunt revisions or heel cord lengthenings.

The problem is that if we don't resuscitate 23 to 25 weekers in order to prevent having survivors with significant disabilities, we also let some babies die who would have been normal or survived with milder problems. The Epicure study, recently discussed on Ex Utero's blog (the abstract is also reproduced there) looked at babies born in 1995 at 23 to 25 weeks gestation. At age 6 years 80% of them had some disability: 22% had severe disability, 24% moderate disability, and 34% mild disability. We can all agree there's room for improvement there.

But does that mean we shouldn't resuscitate 23 to 25 week gestation premies? It partly comes to a question of what the worth is of children with mild and moderate disabilities. For every case of severe disability you prevent by not resuscitating 23 to 25 weekers, you lose about three kids who would have had moderate or mild disabilities or been normal. For every case of severe or moderate disability you prevent, you lose one kid who would have been normal or had mild disability. I understand why people want to prevent cases of severe disability, but can you see why I'm a little uncomfortable if I don't resuscitate 25 weekers? I feel bad for the normal and mildly impaired kids who won't make it. They might not be the brightest kids in our world, and they might have a high incidence of ADHD and maybe even psychiatric problems, but they can enjoy life, and I think their lives have value.

Many will say it is the family's decision to make these kinds of trade offs, and to a large extent it is. But society has a say in it too, and there is a limit to what we let families do. For example, if a family asked me to not resuscitate a 28 weeker - who has a better than 90% chance of survival and about a 10% chance of cerebral palsy - and just let him die, I would refuse their request, and I think most of society would back me up on that. Where, then, is the boundary where I should acquiesce to the parents' request for non-intervention versus deny it?

We are usually saved from this tough decision because the fact of the matter is that very few parents ask us to not resuscitate their child. It's much more common for them to ask us to resuscitate a 21 weeker than to not resuscitate a 25 weeker, and, at least in my case, it's not because I'm sugar coating the information. But it's not surprising that most parents ask us to do everything, because it is so much easier than it is to say let my baby die. The former is almost the default decision; the latter takes a lot of gut wrenching thought and courage.

Vaporized

2007-02-11T22:40:00.000-05:00

The Vapotherm machine was a device that allowed neonatologists to give high amounts of humidified oxygen to babies through their noses, higher than we could with any other device except CPAP. I knew that some NICU's were using it in place of CPAP, so when one of my partners said, "Hey, we should get a Vapotherm," I decided to look for studies in neonates using it.

I found none. In fact, I could find reports of its use in only about 5 neonates, and certainly no well done study assessing its safety or effectiveness. I, and others, had concerns that we might be giving too much oxygen and air flow to a baby, without knowing the consequences. At our next neonatologists' meeting we managed to nix further attempts to get a Vapotherm for our unit.

A few months later, reports about an unusual infection in neonates using the Vapotherm began to surface. Shortly afterwards, the company pulled the product and the use of the Vapotherm in neonatology vaporized. I felt relieved that we had never tried it, although it bothered me that one of my partners wanted to get it when there was so little data available about its use in newborns.

This was an example of neonatologists not using evidence based medicine. Rather than looking for well done studies that showed the safety and efficacy of the Vapotherm, too many physicians said, "Hey, that sounds like a good idea," and started using it based on that. Unfortunately, the history of neonatology is littered with examples of good ideas that turned out to be harmful: large amounts of oxygen, steroids for BPD, phenobarbital for prevention of bleeding into the brain, and so on.

I'm not sure why some neonatologists thought it so necessary to use the Vapotherm without waiting for better evidence. It's appropriate that we always look for better ways to treat the babies, but let's evaluate them correctly. I think some neonatologists - and physicians in general - just don't have the scientific discipline to wait to evaluate a new thing before using it. Maybe we just want to be the first on our block with the new gizmo, but it''s better to be later and sure than to be early and cause harm.

Anticipation

2007-02-09T21:09:00.000-05:00

The strains of the Carly Simon song "Anticipation" ran through my head as I watched the spinal fluid slowly, slowly drip from the spinal needle. I was doing a spinal tap on a baby and the slow moving fluid reminded me of the old Heinz ketchup - the slow ketchup - commercial where the ketchup gradually pours from the bottle while Carly Simon's song plays in the background.

It can be a little tricky when the spinal fluid takes so long to come out. You have two choices. You can take your time and wait for the fluid to come, but then the spinal tap takes seemingly forever to do, and the baby is stuck with a needle in her back for a long time. On the other hand, if you try to make it come out faster by turning or pushing in the needle, the fluid can either stop coming out or turn bloody, neither of which is desirable.

I decided to be patient and just wait. The baby didn't seem to mind - she had actually fallen asleep. To pass the time the nurses and I talked about the astronaut who drove from Houston to Florida to confront a possible romantic rival. You may have heard the story. That two members of this love triangle were astronauts was interesting enough, but the fact that the astronaut wore diapers from Houston to Florida so she wouldn't have to stop made it seem like a tale from the land of the bizarre. It turns out that astronauts wear diapers during takeoffs and landings, which makes sense, I guess, if you think about it - something I had never done before. I don't know about you, but when I see astronauts walking out to the shuttle I'll never think of them the same way again. I'll just be wondering if their diapers are clean.

We finally finished the spinal tap and I removed the needle from the baby's back. The baby, who had been so good during the procedure, now started crying, which seemed a little paradoxical. I looked around and could see no romantic rival to her; maybe she just needed her diaper changed.

Bungee

2007-02-07T19:25:00.000-05:00

The mother came in with preterm labor at 21 weeks gestation according to her last menstrual period. Since she had no prenatal care, we weren't certain that the gestational age was correct, and as sometimes happens in these cases, when the baby was born he looked and weighed more like a 24 to 25 weeker. My partner resuscitated the baby, in accordance with the mother's wishes, and we admitted him to the NICU.

He really did pretty well at first. He was on a ventilator but on modest settings and not much oxygen. The afternoon of the admission I sat down with the parents and had a long chat with them about premature babies of this gestation. I told them, among other things, of the typical problems these kids have, the extended NICU stay, the risk of serious complications like intracranial hemorrhage (bleeding into the brain), the survival rates for kids like this - about 55% to 75% - and the percentage of survivors who have impairments - about one-quarter have major impairments, one-quarter moderate impairments, and about one-half are normal, although there is a high incidence of problems like learning disabilities, attention deficit disorder, and borderline intelligence in the normal group.

There was understandably concern in the parents' eyes after our talk, but hope too. I told them their baby was doing well right now, but he still had a long way to go.

About 24 hours later the baby was dead. The morning after I talked to the parents, he suddenly desaturated (the oxygen level in his blood dropped), and none of our interventions - ventilator changes, oscillatory ventilation, and so on - could get his oxygen level back up. An ultrasound of the head showed a massive intracranial hemorrhage (IVH). My partner and I discussed it, and after discussion with the parents he removed the baby from life support, and the baby died.

A variety of anatomic and physiologic features of very premature babies put them at risk for IVH. Fortunately, its incidence has decreased in the last 25 years, and most babies who have an IVH usually have a small one, but we still see awful ones like this from time to time. It's very frustrating, because they can be unpredictable. A kid you think might get one doesn't, and vice versa. This baby was cruising along nicely; he didn't need meds to keep his blood pressure up, had no fluid boluses, and was about as stable as a 24 to 25 weeker could be. Why did he have the bleed when other, sicker premies don't?

I couldn't help but think of the bevy of emotions this mother must have experienced in the last few days: The worry of preterm birth and losing the baby; the joy of the baby being older than thought and potentially viable; the sobering news of the possible outcomes; the hope caused by his initially good condition; and finally, the devastation of the severe hemorrhage and the sorrow of holding her baby as he died. I often think that the emotional journey of a NICU parent is like a roller coaster ride, with many ups and downs, but this mother's was more like a bungee jump. You don't recovery quickly from something like this.

Evidence

2007-02-05T11:40:00.000-05:00

Some of the comments in my previous post Implants brought up the issue of evidence based medicine in the NICU. Evidence based medicine means using medical therapies that have been tested in well done studies and found to be beneficial, as opposed to practicing medicine according to the "Hey, this sounds like a good idea, let's see if it works" method. I am all in favor of using evidence based medicine and think that generally I practice it, but I have to say it's easier said than done.

There are a couple of ways by which people may fail to practice evidence based medicine. Some neonatologists, and physicians in general, fail to practice it by using therapies that have not been adequately tested for safety and efficacy. An example of this might be the liberal, unchecked use of high amounts of oxygen in the early days of neonatology that resulted in an epidemic of retinopathy of prematurity. (I'll post about another example in the next week or so.) At other times physicians don't practice evidence based medicine because they don't know the latest evidence. Neonatologists who continued to use steroids for BPD, even after studies showing their detrimental effect on neurodevelopmental outcomes, fall into this category. I know a couple of them.

Sometimes, though, we would like to practice evidence medicine but cannot, simply because evidence does not exist or is not conclusive regarding a given situation. Absence of data doesn't mean you don't have to treat a problem. I wish I knew the best way to treat hypotension (low blood pressure) in tiny premies - for that matter, I wish I knew when to treat hypotension in them - but the data isn't clear. That doesn't mean I can ignore the problem. In another example, I still have to feed babies, even though it's not well resolved how fast to increase a baby's feedings each day.

Although there is more to do regarding evidence based medicine in neonatology, there has been tremendous progress in obtaining good evidence through well done studies in neonatology. A very partial list of examples includes artificial surfactant, the use of IVIG to prevent infections, the use of oscillators versus conventional ventilators, Vitamin A for prevention of BPD, and phenobarbital for prevention of intraventricular hemorrage. All have been studied well, (some worked and some did not) resulting in better care for neonates. The establishment of networks like those of the NICHD neonatal research network and the Vermont Oxford Network have furthered the cause of evidence based neonatal practice and will continue to do so, as will the Cochrane collaboration.

We should all realize, too, that it is very difficult to do good studies in humans. Earlier in my career I did a couple of randomized controlled therapeutic trials. They were nothing earth shaking and very safe for the participants, but they were still tremendously difficult to carry out, requiring (appropriately) approval from the human investigation committee, informed consent from the parents, diligent supervision of the NICU staff to make sure they followed the protocol, and, last but not least, money. This was all in addition to my regular job taking care of babies. To say the least, it was a real pain to do.

Speaking of money, we could use all the help we can get in obtaining money for research. The NIH's budget is getting lower, not higher. Are you writing your congressmen to protest this? Are you voting for people who want to put a reasonable portion of your tax dollar into research? We're not perfect in neonatology, but unless you're part of the solution, you might be part of the problem.

Performance

2007-02-01T19:22:00.000-05:00

There is some debate about whether large NICU's are better than small NICU's. There have been studies that show that large NICU's in general have better mortalilty rates than smaller ones. The studies aren't perfect, but it's probably true.

I have worked in both large and small NICU's and have enjoyed them both. I have been fortunate enough to work in units with good outcomes, where the babies have good survival rates and low rates of intracranial hemorrhage. In a large NICU you can be very busy and see all kinds of weird things. I suspect that the large NICU's have better outcomes because they are always in practice; some of the care becomes almost automatic. In a small NICU, though, it can be surprising how much interesting stuff you see. In my experience, I had a little more time to talk with the parents there, and the atmosphere was a little homier.

There are those who would say that health care payors, such as insurance companies, should require their babies to go to bigger NICU's, given the studies showing better outcomes in them. There was a time I would have agreed with that, but I no longer do. Could I be influenced by the fact that I have worked in a smaller NICU? Of course!

But here's the thing: The studies looking at outcomes of large versus small NICU's were using size of the NICU as a proxy, a substitute for the actual quality of outcomes at a given place, because the outcomes were not easily available. That is no longer necessary, because nearly every NICU now belongs to some collaboration of NICU's that keeps track of outcomes and lets you know how your unit is doing in comparison to others. (One of the largest of these is the Vermont Oxford Network, in which our NICU participates.) So it is no longer necessary to assume that a unit has better or worse outcomes because of its size. Instead, you can fairly easily compare the actual outcomes.

Although large NICU's might in general do better than smaller ones, there will be some large NICU's that do worse than smaller ones. It would be a shame to close those smaller ones and send the babies to larger units with worse outcomes, so let's stop this nonsense about assigning babies only to large NICU's and instead send babies to NICU's with the best outcomes, regardless of size. (You could make a case that small, good NICU's should combine and possibly become even better, but a discussion of regionalization of NICU's - or rather the lack of it - would give me a headache.)

Pay for performance. Supposedly it's coming. Let's do it right.

P.S. Due to some Blogger malfunction, you and I have not been able to get into my comments section for about the last day. I was able to see my comments, though, by going through my "edit posts" page. Thanks to all for the kind comments, well wishes, and suggestions.

Blogiversary

2007-01-30T19:25:00.000-05:00

It was one year ago today that I started blogging. Please indulge me on this occasion in a few random thoughts about blogging.

Blogging has been very interesting and a lot of fun. It has allowed me to have conversations with people I never would have otherwise, about subjects I probably wouldn't have discussed otherwise. But I wonder how long I can keep it up. I mean, let's face it, I covered most of what I wanted to say in the first six months of the blog: my combination of frustration and sympathy for poor, single mothers; my thoughts about resuscitation of extremely preterm children; thoughts about heroic measures for babies with devastating defects like holoprosencephaly and Trisomy13; thoughts about fathers in the delivery room; and so on. I worry my blog is getting repetitive. How many posts can I write about drug using mothers or outcomes of premies before my readers get tired of it? I don't know, but I guess I'll keep plugging away.

I don't read many other blogs very often, and I'd like to apologize to bloggers who faithfully read my blog when I don't read theirs. It's not that I don't find them interesting; it's just that there are only 24 hours in a day and by the time I'm done maintaining my blog, my time for the blogosphere is up. The blogosphere can be a seductive siren, and sometimes I have to force myself away from the computer to tend to other areas of my life.

I didn't realize when I started blogging how much fun and how interesting the comments section could be. I really don't mind when people disagree with me. It's a big world with room for lots of different opinions. At times, though, you have to have a bit of a thick skin, at least if you want to be candid, because now and then some of the cuts get a little personal. Until I read the comments, I didn't realize I was sexist, racist and adolescent. Well, maybe the adolescent part I did.

A few months after I started blogging, and after I was getting some comments from regular readers, I said to my teenaged daughter, "I've got more friends in the blogosphere thanI do in real life!" She shook her head and looked at me. "You are so pathetic," she said. We both laughed. It's good thing I'm not too insecure about my social life. Now, though, I might phrase it differently, because the blogosphere, I think, is part of real life, not distinct from it.

The blogosphere can also be a little unpredictable. Some posts I think will generate a lot of interest don't, and vice versa. Nobody has asked me what my favorite posts of the last year were, but if they did, it would be hard to decide. (Warning: Attempt at humor ahead.) Hmm....I don't know, but those posts entitled Moustache and Nudity keep coming to mind....

Whacked

2007-01-28T15:50:00.000-05:00

I had spoken with the father before and knew he didn't speak English very well, so it was a bit of an adventure when he came up to the desk and tried to tell me something. Fortunately, his son was doing well and we hadn't needed to have any major serious conversations.

"You are Muslim?" he said.

"Me? No," I replied. Why he would think that? Then I understood. "O, you are Muslim," I said, wondering where this was going.

He smiled broadly and nodded. He said something about his baby that I didn't understand. Seeing my quizzical expression, he tried again. He held up his index finger and moved his other index finger around it in circles. "My baby," he said, "You will cut?"

I got it, having had these kinds of conversations before. Dad wanted to make sure one thing was done: he wanted his baby circumsized. It's pretty important to some people, so important that they're worrying about circumcision while their baby is still on a ventilator or something. It's so important that although they won't try to ask about anything else in their broken English, they will try anyway they can to communicate their desire that their kid get whacked (my personal term for the event.)

I assured him that yes, we could have his baby circumsized before he went home. "Tomorrow?" he asked hopefully. I tried to tell him that we should really get his baby off of CPAP before circumsizing him, but I'm not sure he understood. He might have gone home that night expecting his kid to weigh just a little bit less the next day.

I know that some people get pretty excited about circumcision. I guess there are some legitimate arguments on both sides of the issue, but as long as they use anesthesia, I can't get too worked up about the whole thing. It's rare that parents even ask me my opinion about circumcision; the decision is usually made well before birth. I don't like doing the procedure myself, personally, so I'm glad the obstetricians do them in our area. And in cases like the one above, I'm glad they get the "informed" consent, too.

Rubinstein-Taybi

2007-01-26T10:29:00.000-05:00

The mother of the six month old baby looked tired, not just the kind of tiredness you get from one night's poor sleep, but the weariness you get from many nights of worry. This was during my year of general pediatrics practice, before I became a neonatologist. I had known the mother from the hospital where I trained, and now she was bringing her baby to see me.

The mother was a licensed practical nurse. When I first met her she was like many people in their 20's, nice and easy going but looking for that right person for a spouse. You've seen this picture before: She found her dream guy, they married, bought a house, and began to plan a family. The pieces of her life were falling into place, her dreams were becoming reality.

But then life threw her a curve. Her first child was born with Rubinstein-Taybi syndrome, a syndrome characterized by broad thumbs and toes, developmental delay, and an average IQ of 51. Like many babies afflicted with this syndrome, hers had feeding problems, frequent respiratory infections, and gastroesophageal reflux, adding up to a baby who was a real handful to care for. In addition to the infant problems, there was the knowledge that this baby would never be normal and would likely always need her support. This wasn't how the dream was supposed to go, and it showed in mother's eyes.

To be honest, there wasn't much I could do for her. Sure, we did our best to minimize the reflux. I think we sent him to physical therapy, although in these cases that is more to give the family something to do than to significantly affect the final outcome. Mostly, though, the mother had to deal with this irritable, delayed baby on her own.

Like most people, I have great sympathy for such parents. It's bad enough that he had health problems as an infant, but the fact that there was no hope he would become normal, like she had dreamed of, was probably harder on her than his current illnesses. We expect when we are pregnant that everything will turn out fine, but there are no guarantees of that, and it can be a bitter pill to swallow.

It is difficult to compare people's suffering, but I suspect it is harder for parents of children with known unfortunate syndromes than it is for parents of very small premature babies. With most of the premies there is at least the hope that the child might catch up and become normal, but with kids who have, for example, Rubinstein-Taybi syndrome, the suboptimal neurodevelopmental outcome is certain. Unless and until those parents make a quantum adjustment in their aspirations for their child, life must seem dreary indeed. I don't envy them.

Promise

2007-01-24T16:45:00.000-05:00

I spoke over the phone to the answering machine. "Ms. Doe, please either call me or bring your baby in for a jaundice level. We want to be sure the jaundice doesn't get so high that it causes brain damage." Normally I wouldn't want to alarm parents by using the words "brain damage," but it seems that sometimes you have to try to scare them to get them to do what is needed. Besides, what I said was true.

This baby had gone home 4 days before, after being treated with phototherapy for jaundice caused by a B-O blood group incompatability. (Mother's antibodies get into the baby's system and break down blood cells, leading to an increased level of bilirubin, which causes jaundice. Too much bilirubin causes brain damage.) At discharge, mother had promised to bring the baby back in two days for a jaundice level (bilirubin level), so we could make sure the jaundice wasn't worsening again, but now it was four days past discharge and we hadn't seen her. The previous day the nurse had called her and left a message. Earlier this day she had called again and paged her, to no avail. Finally, a couple of hours after I called her, the mother called back. She promised me that she would bring the baby in that day for a bilirubin level.

Chances are the level will be okay. Usually the jaundice doesn't worsen too much after stopping phototherapy. But occasionally it does, and it only takes one baby with brain damage from jaundice to ruin your day - and potentially lead to a large malpractice suit against you.

If there is one thing that drives doctors crazy, it's when patients don't do what they are supposed to do, especially when they have promised to do it. Before I discharged her baby, I asked the mother if she was sure she had a way back to the hospital for the jaundice level and made sure she understood its importance. She was young but seemed reliable. I knew there was a chance she wouldn't bring the baby back, but, except in the worst social circumstances, we simply can't keep babies in for days until we're sure the jaundice level is okay.

When I talked to her on the phone, she told me that she was really sick two days before, when she was supposed to bring the baby in. Maybe so, but that didn't explain why she didn't return our calls or have someone else bring the baby in. I know that many of my patients don't have cars or a lot of friends with cars, but if they can't bring the kid back, they should just say so and we'll figure something else out. Work with us, folks. We really do want what is best for the child.

I'm waiting for her to show up as I write this. I hope the baby's okay. She probably is, but I'll have just a little less acid in my stomach when she shows up and we can make sure of it.

Disagreement

2007-01-22T12:10:00.000-05:00

The extremely premature baby had a large intracranial hemorrhage, a large bleed into her brain, and most likely she would have significant brain damage. The question was whether or not to remove her from life support, to disconnect her from the ventilator and allow her to die.

It is not an easy decision. Different neonatologists have different opinions about it, just like different readers of this post will. Some neonatologists are more likely to offer termination of life support to the parents, others less likely. There is a difference of opinion about how big the hemorrhage must be to justify removal of life support. Legally, we are really only allowed to terminate life support if continued care is futile or inhumane, not just because a baby will be brain damaged, although many physicians and parents ignore that legality.

This specific case happened several years ago at an NICU I moonlighted in once in a while, covering some nights when they needed help. The two neonatologists full time at the NICU disagreed about discontinuation of life support, one in favor, one against. They each talked to the mother of the baby, leaving her confused, I'm sure. The debate went on for days, with no resolution. The obstetrician became involved, siding with stopping support. (Malpractice awards for a damaged baby can be much greater than those for a dead baby.)

The debate went on for so long that it became moot, because the baby's lungs and ventilator settings had improved enough that the baby would survive off the ventilator - but the neonatologists were so busy dissing each other that neither of them recognized this. They kept debating the issue. When they asked my opinion, I pointed this out to them, and eventually the baby was taken off the ventilator and survived.

The two neonatologists' personal animosity towards each other preceded this case and lasted long afterwards, too. Unfortunately, it affected their care of the baby and mother, making a sad situation sadder. I have had situations where colleagues and I disagreed about stopping life support, but we always came to some agreement before we presented it to the parents, or if we couldn't agree, we presented that to the parents in a reasonable manner. Unfortunately, there was little done reasonably in this case.

This was not my profession's finest moment, and it might make you feel better to know that both of those neonatologists were fired from the hospital within the next few years. It might discourage you to know that they both quickly found jobs at other NICU's. I don't know what happened to the baby, but I suspect she's struggling neurodevelopmentally somewhere. I offer my best wishes to the mother and child, and hope the neonatologists have grown up.

Decapitation

2007-01-20T17:59:00.000-05:00

The recent decapitation of Saddam Hussein's half brother during his execution by hanging reminded me, believe it or not, of an art exhibit I saw a few years ago. It was at the Hirschorn Museum, part of the Smithsonian Collection, in Washington, D.C. I don't remember the name of the artist, but let's just say that to call him avant garde is a major understatement. It was probably the weirdest art exhibit I've ever been to but was nevertheless enjoyable.

One of the pieces of the exhibit was in a pitch black room. After you stood in the room for 30 seconds or so, a light came on to reveal a poster in front of you. The poster told the story of a doctor during the French Revolution who was interested in seeing how long the human brain remained conscious after it was separated from the body. This being the French Revolution, he had plenty of opportunities to study it.

The poster went on to describe a beheading where the doctor continued to talk to a head after the guillotine dropped and separated it from its body. He described the face's expressions and reactions in some detail, noting that the head remained conscious for about 50 seconds - about the time, the poster's last line read, that it took you to read this poster. Then the lights went out and the room was pitch black again.

It was an eerie feeling standing in the dark room. I don't think a better demonstration of the length of time the head remained conscious could be made. What was the head feeling during this time? Was he feeling a sore neck? Did he have a headache? Could he feel his body? Why do we find such macabre things interesting?

Answers to those questions require further study, I guess. I moved on to the next room, where the artist had a movie of a bug moving its legs over and over again. Beauty in art, I suppose, is in the eye of the beholder.

Home II

2007-01-18T19:52:00.000-05:00

Many moons ago, when I was relatively new to the blogosphere, I wrote a post critical of home deliveries, and it gave me my first introduction into how volatile the "commentsosphere" could be. In a comment on a post a few weeks ago, cj brought up the subject of home deliveries again and wondered what my feelings were on them now. Since I'm always looking for ideas for posts, I thought why not write about them again? Now I know how to cut off comments if I have to (just kidding!)

I should say that in the two disasters I saw from home births, both were done by uncertified midwives who kept the mother in labor at home way too long when other intervention was called for, resulting in dead or severely brain damaged babies. Not surprisingly, this did not give me a good impression of home deliveries. It's only fair to admit, though, that there is a difference between uncertified and certified midwives, and perhaps things would have been different with certified midwives who knew what they were doing.

Still, though, I'm not quite ready to give my full blessing to home deliveries. Like most neonatologists, I've seen babies come out bad unexpectedly from supposedly low risk deliveries, and when that happens, frankly, it's good to have a neonatologist around. Sure, midwives are trained in newborn resuscitation, but unless you resuscitate depressed babies all the time - like neonatologists do - you're not going to be that good at it.

In the comments to that long ago post, several people cited literature about the safety of home versus hospital deliveries, both pro and con. Normally I'm a big fan of evidence based medicine and making decisions using data, but this might be one time where the literature is not that helpful. The problem is that disasterous deliveries, whether at home or in the hospital, are very low frequency events, so a study would have to be almost prohibitively huge to give a fair comparison of home versus hospital outcomes. I'm simply not convinced that any of the studies cited were big enough.

I still think that the best solution is for hospital based deliveries to get better, to ditch the impersonal and degrading garbage associated with them. I think deliveries done in a dedicated birthing center, perhaps in a separate building on a hospital campus, with nice rooms and quiet delivery personnel, yet connected to the hospital in case rapid action is needed before, during, or after delivery, is the way to go.

Come on folks. Both sides have to give a little in this debate. Pro home-birthers need to acknowledge that it's about the baby, not the experience, and that homes are simply not as well equipped to handle bad babies as hospitals are. Anti home-birthers, though, need to acknowledge that too many hospital deliveries have too many unnecessary impersonal and obtrusive things, ranging from yelling obstetricians to lousy, stirruped posture, to normal babies being whisked away from their mothers right after delivery. It's too bad; it shouldn't be that hard to give a good birthing experience in a hospital - but apparently it is.

Snippy

2007-01-16T12:45:00.000-05:00

A pediatrician friend told me of a patient of hers who went to a pediatric emergency room a couple of weeks ago. The patient is a toddler of a single mother without much money. I don't know many details of the encounter except that at one point the emergency room pediatrician snipped at the mother "How come you can afford a cell phone but can't pay for your child's medicines?"

The mother was offended and complained to my friend, her regular pediatrician. When my friend related it to someone in management at the pediatric emergency room, she discovered that it was not the first time the emergency room pediatrician had done something like this.

I think most of you would agree with me that doctors should not say such things to patients, for several reasons. For one thing, it's just plain rude. For another thing, the doctor might not know the whole situation. In this case, the mother used a pre-paid cell phone as her only phone, which was the most inexpensive way for her to have a phone. Also, saying such things to patients doesn't do any good. Did the ER doc really expect the mother to get rid of her cell phone because of that comment? Finally, it belittles people, and there is little to ever be gained by doing that.

I must admit, though, that there are times when it's tempting to make some snide comment to a patient. A few days ago we had a 21 year old in the labor and delivery area having her fifth child. I was tempted to say to her "What's the problem here? Is birth control too difficult for you to master? Or do you just not give a shit about yourself or anyone else?" (Kids, don't use these words at home!) We can all agree it's best I left those words unsaid. On the other hand, if I were to a have a compassionate talk with her at the appropriate time about her problems with multiple pregnancies, that would be a different matter.

I'm not sure what's going to happen to the snippy emergency room doctor. Maybe she needs some counselling. Maybe, though, she just needs a blog where she can get those things out of her system.

P.S. Check out a new pediatric grand rounds at Parenting Solved.

Phototherapy

2007-01-14T19:49:00.000-05:00

I'm guessing that a lot of you know what phototherapy is. It's when we shine lights on babies to help make their jaundice, the yellow tint to the skin that so many babies get, go away. We've been using phototherapy for about 50 years, since the late 1950's when some infant caregivers noticed that babies in the sunlight had less jaundice than others. We use phototherapy very commonly, especially in premature babies, because bilirubin, the chemical that causes jaundice, can also cause brain damage. It's thought to be one of the safest therapies we use, with very few side effects. It can contribute to a baby getting a little dried out, just like laying on a sunny beach all day, but that can usually be easily managed by giving the baby some more fluid.

The last decade or so has seen the development of improved phototherapy, some powerful light systems that can make the jaundice go away even faster. Such systems have been accepted pretty readily into neonatal practice. When the alternative to phototherapy is the possible need for an exchange transfusion - where we replace the baby's blood over about an hour's time with a couple of units from the blood bank - we're happy to have effective phototherapy to use.

I read with interest, then, a Medscape news blurb about a recent study that claims that neonatal phototherapy increases the risk of a child developing nevi, those little brownish things on our skin that are commonly called moles. In a study in the December Archives of Dermatology, French investigators reported that 8 to 9 year old kids who had received phototherapy as newborns had more nevi sized 2 to 5 millimeters than kids who did not receive phototherapy. The significance of this is that nevi can turn into melanoma, a deadly skin cancer. The more nevi one has, perhaps the greater risk of melanoma.

This study, however, did not show that phototherapy increased the risk of melanoma, just the risk of more nevi. A couple of other studies in the past have not demonstrated an increased risk of melanoma with phototherapy, either. Also, this study was pretty small, including only 18 phototherapy exposed kids, and it did not show a dose response relationship. That is, kids who got more phototherapy did not get more nevi than kids who got lesser amounts of phototherapy, which I would expect if the phototherapy were really causing the nevi.

Will phototherapy be one of those neonatal therapies that historically neonatologists thought were safe, like oxygen, chloramphenacol, benzoyl alcohol, phenobarbital for prevention of brain bleeding, and steroids for BPD treatment, that subsequently turned out to be harmful? I don't really think so. We've used it for so long that by now we probably would have discovered any harmful effects that occur frequently. Also, phototherapy is better than the alternatives: exchange transfusions or no treatment, which can lead to brain damage, so I'm still going to light up the babies. The study won't change my practice. It will just make me worry more when I give phototherapy. Great....

P.S. While surfing the web yesterday, I discovered that I have been nominated for a 2006 Medical Weblog Award in the Best Health Policies/Ethics Weblog category. I'm flattered as all get out to be nominated and would like to thank ex utero for nominating me. (Apparently it only takes one person to nominate you. Maybe it's not as great an honor as I thought!) The voting ends today, January 14, so there's no sense in putting one of those Weblog Award Nominee pictures in my sidebar (as if I could figure out how to do it.) Forgive me for tooting my own horn here, but I just couldn't not tell you. Onward and upward!

Jargon

2007-01-12T17:05:00.000-05:00

Some time ago I received notice that I must attend a seminar at our hospital entitled "Agenda for Enterprise Visioning and Action Planning - Developing the A3 Transformation Roadmap." What? I was given no more information about the seminar initially, and I didn't really know what it was about. I guessed that it has to do with learning to plan for a department or something like that. Recently I received the agenda for the two day seminar, and I still don't really know what the thing is about, because the jargon used in it is simply incredible.

The agenda is divided into four columns. Each agenda item has an entry in each of the columns. The columns are entitled: Time - I know what that means; Action - okay; Deliverable - huh? and Responsible - it tells us who is supposed to do it. Under the action column one of the entries is "Paradigm and Core of Transformation." A sample Deliverable entry is "Training on using quality function deployment to prioritize high leverage improvement areas." Frankly, they couldn't make this less understandable if they tried.

And I suspect they did try to make it difficult to understand. I've seen these kind of lectures before, ones that try to improve management skills (I think that's what this is about), and they usually employ this type of gobbledygook language. It seems they use big terms to make it sound important or scientific, to try to make their information seem to have more substance than it really does. If this is like other seminars I've been to, they'll have about two hours worth of information to present in eight hours.

Maybe you're thinking that a physician has no right to complain about jargon, that doctors take the cake for using difficult to understand words. It's true, we do use a lot of medical language that lay people might not understand. (Someone once told me that the purpose of the first two years of medical school is to teach you the language.) There's a difference, though. We use big words to make communication more efficient. If we didn't use words like bronchopulmonary dysplasia and postprandial cerebral hypoperfusion we'd have to describe what those entities are each time we refer to them, and that would take forever. I'll admit that sometimes we use a fancier word than necessary - like metastasize instead of spread - but most of time there's a decent reason for the medical jargon.

I wish I could say I'm looking forward to doing Deliverables like Prioritize Value Streams against the Key Measures, but it will likely be a long day. (To make matters worse, the agenda says at times we have to break into small groups. I hate small groups.) Oh well. It shouldn't be too strenuous, and in the end I'll know how to Re-cap the Transformation Plan of Care. Yippee!

Malaria

2007-01-10T10:30:00.000-05:00

Malaria is one of those diseases that has practically no significance in America but has major impact in other parts of the world, especially Africa. There is an article in the latest Time magazine about the disease and ways we can combat it. The article is written by Jeffrey Sachs, a prominent economist who has advised many programs, including the World Bank, on poverty and written the book The End of Poverty.

Sachs points out how devastating malaria can be - he predicts it will kill two million African children this year - yet how relatively easy it is to prevent and treat with some quite inexpensive tools. Insecticide treated mosquito nets, which cost about $10 apiece, are an effective preventive measure, and a new medicine can treat malaria at a cost of about a dollar per treatment. The Red Cross has demonstrated that the mosquito nets can be distributed well in pilot programs in Togo and Niger.

The problem is that many African people and nations can simply not afford ten bucks per person for such a mosquito net. Sachs estimates that a comprehensive prevention and treatment program for the entire African continent would cost about $3 billion per year. That sounds like a lot, but Sachs gives a couple examples of how minimal that amount is compared to some other items. For example, if we figure there are about one billion people in the high income world, that's $3 apiece. It's 12.5% of the estimated $24 billion in Wall Street's Christmas bonuses. Another example came to my mind. If we figure the Iraq war to cost about $80 billion per year - likely a conservative estimate - that $3 billion pays for 14 days of war.

It's only fair, though, that I relate an example that hits a little closer to home. If we figure that an extremely premature baby's hospital bill is $500,000, that's equivalent to the cost of 50,000 insecticide treated mosquito nets, which have the potential of saving many lives, not just one. Is that fair? Of course it's not, and it bothers me. The problem, though, is that I don't know how to take that $500,000 from the extremely premature babies and give it to the kids who need mosquito nets, and I don't think anyone else does either. Let's face it: If we were to stop caring for tiny premies in order to save money, it's highly unlikely that the money saved would go to African children. It would be much more likely to go to tax cuts, pork barrel projects, or American social programs.

So what are people with a conscience to do? Frankly, I'm not about to stop resuscitating premature babies, especially when parents and society tell me I should resuscitate them, but I can stop ignoring the malaria problem and donate money for nets. Sachs suggests charities like malarianomore.org and nothingbutnets.net (no pun intended). I agree with Sachs and also with Jimmy Carter, who once famously said "Life isn't fair."

Outcomes

2007-01-08T18:10:00.000-05:00

The January issue of Pediatrics has two articles about outcomes of extremely premature babies and a commentary about them. An article from Finland looks at the outcomes at 5 years of age of about 500 babies born in 1999 to 2000 weighing less than 1,000 grams (about 2 pounds, three ounces) with an average gestational age of 26 weeks. 12% of them had cerebral palsy and 3% were blind. In an earlier group of similar babies, the same authors found that 9% had cognitive disability and 4% had hearing disability. Another article from Ohio looked at babies of the same birthweight born in 2000 to 2002 and noted that their outcomes at age 20 months were improved compared to similar babies born between 1982 and 1999. 23% of them had neurodevelopmental impairment, defined as neurosensory impairment (cerebral palsy, blindness, or deafness) or mental developmental index (think of it as sort of an IQ measurement) less than 70.

Neither article looked at things such as school performance, but the commentary relates that even in kids with birthweights less than 1,000 grams who escape major neurodevelopmental disability, more than 50% "struggle in school performance and have difficulty with academic competitiveness."

As you may have noticed from the comments on my "Ignored" post of ex utero, a practicing neonatologist, and Helen Harrison, a mother of a disabled NICU survivor, one can take an optimistic or pessimistic view of outcome statistics. 77% of them don't have major neurodevelopmental impairment? That's good. More than 50% of them have school performance problems (and many have things such as ADHD and emotional problems)? That's bad. Some studies suggest that NICU graduates with neurodevelopmental problems rate themselves as having a good quality of life - that's good. Another study says that more that 40% of premies less than 33 weeks gestation will not be able to live independently as adults - that's bad. Anecdotally, too, we know that some kids with impairments are a huge burden to their parents, while others are the light and joy of their parents' lives. (Some kids are probably both at the same time.)

What do we do with these outcome statistics? Some things we can all agree on: We should use them to give potential NICU parents honest information. We can follow NICU graduates carefully for neurologic problems so interventions can be started as early and optimally as possible. Also, the data show we need to continue to try to improve our care of tiny babies, especially as it relates to optimizing their brain development.

It's when we start to use these statistics to make decisions about resuscitating or not resuscitating very premature babies that things get sticky. Not resuscitating a baby because there is a high chance of death or severe neurodevelopmental impairment, as is the case with 22 to 23 weekers, is one thing (although, technically, in the U.S it's illegal to discriminate against someone on the basis of handicap), but should the fact that they might have school performance problems be used to argue against their resuscitation? Should a child's increased risk of attention deficit disorder play a part in that decision? I'm not sure that I'm ready to slide that far down a slippery slope.

Wasted

2007-01-06T14:25:00.000-05:00

The nurse drew my attention to the note on the front of the baby's chart. "The father of my baby, John Doe, is not to be allowed to visit him." I asked the nurse what the father had done to earn the mother's wrath. For one thing, he was badmouthing the mother in the NICU when she wasn't there, accusing her of having five kids by five different fathers, which is apparently true. Hmm....this may be a legitimate complaint, but if you're one of the five fathers - or maybe the sixth - I'm not sure you have any right to complain.

Also, while the father was visiting the previous evening, another mother of a two week old 27 weeker was also visiting her baby. The father took a shine to her, I guess, because he asked for her phone number. That is just plain bad form, trying to hit on a woman - who happens to be two weeks post delivery - who is not the mother of your baby while you are visiting your baby in the hospital. I've heard a lot of weird things, but this was a new one for me. I said to the nurses, "Does mother know he asked for the other mother's phone number" - no, she didn't - "or does she just know that he's a scumball from previous experience?" We all had a good laugh at that.

I might get some comments criticizing me for laughing at that, and the truth is, it is a pretty lousy situation to have the father of a baby acting like that, and it's certainly not funny to the mother. But please realize that we can't help but laugh at some of this stuff. It must be some sort of a mechanism we use to cope with these sad situations. It's not quite so bad that we're saying, "If I didn't laugh at it, I'd cry," but it's something like that.

The baby went home today after only a short stay in the NICU, so now it will be up to the mother to keep the father away. Unfortunately, it sounds like the kid doesn't have much of a chance of her parents getting along very well.

Meanwhile, in the NICU just one or two cribs away, a mother who was high on cocaine at the time of her delivery is still inappropriately silly seven hours later. As she leaves the NICU to go back to her room she turns to me and says, "Now, what room am I supposed to be in again?" Twenty years old and already wasted....

P.S. Please welcome Your Fellow Man to the blogosphere over at The Bulging Bag.

Devotion

2007-01-04T14:23:00.000-05:00

She saw me as I walked past the NICU waiting room and hailed me. The mother of one of our graduates, she was now at the hospital because a relative was delivering a baby. I was delighted to see her and get an update on her only child.

Born at 28 weeks gestation several months ago, the baby was mature enough that he should have done well, but he was very small for his age and never did well from a respiratory standpoint. He even needed to go home on a ventilator. (Note to clinicians: I suspect he had some degree of lung hypoplasia.) Now followed by a pulmonologist, he had been re-hospitalised for breathing problems and only recently gone home again.

It was a little discouraging to hear mom tell me about him, because he clearly still had significant lung disease. He still needed a lot of help from the ventilator and a high oxygen concentration to maintain a normal level of oxygen in his blood. In fact, it sounded like his lungs had not improved at all and perhaps worsened since we discharged him, which makes you wonder if he'll ever improve and come off the ventilator, or whether he'll even survive. On the bright side, though, his neurodevelopment sounded pretty good. Mom said he was smiling and rolling over - no small feat when you're attached to a ventilator pumping forty breaths per minute into you.

Mom, only 20 years old and single, seemed to be doing pretty well, even though it takes a tremendous effort to care for a baby on a ventilator at home. She was approved by insurance for 16 hours of nursing per day, a big help, although they could not always find enough nurses to fill the 16 hours per day. Also, mom seemed to be pretty realistic about her baby's condition. In a statement that was hopeful yet heartbreaking at the same time, she said, "I don't know if he'll ever get better, but I'm sure going to enjoy him in the time I have with him."

I've written some unflattering things about young single mothers (mostly about ones with multiple pregnancies and kids), so it's only fair that I report a good one when I see her. I was tremendously impressed by this mother and her devotion, especially at an age when she wouldn't normally be inclined to sit around at home very much. An attractive woman with nice clothes and a stylish haircut, she looked like someone who should be having a date at a nightspot or walking the mall with her friends; instead, she is at home nearly all the time caring for her fragile child.

We can take nothing for granted in life, and that is especially true around childbirth. Regardless of whether her baby survives for more than a couple years or not, this woman's life will forever be changed because she had a sick, premature baby who was on the bad side of outcomes. My heart goes out to her, and I wish her all the best.

Ignored

2007-01-02T20:10:00.000-05:00

Among the many articles and news stories following Gerald Ford's death, I thought one of the most interesting was about his popular wife Betty Ford. National Public Radio aired a story about her breast cancer and her decision to go public with the diagnosis and the fact that she had a mastectomy. That may not sound so unusual today, but in 1974 such openness about cancer and operations like mastectomies was unusual. Instead of withdrawing her cancer from public view, she served as an example for many women and inspired many to obtain screening for breast cancer.

We could use a similar example today, not for breast cancer, but for the problem of babies born at the so called border of viability, about 23 to 24 weeks gestation. What to do with these babies - resuscitate them, not resuscitate them - is a big issue in neonatology yet is rarely discussed in society. I'm not wishing an extremely preterm birth on anyone, but if, say, the President or Vice-President had a child or grandchild born at 23 weeks gestation it could put the issue squarely into the public eye.

I have written about decision making regarding resuscitation of these kids before. Given their low rate of survival (30% for 23 weekers, 57% for 24 weekers) and the high rate of impairments in the survivors ( greater than 50%), is it justified to spend so much money on them? Does society want us to do everything we can for all of these babies? On the other hand, is it acceptable to simply let these kids die without trying? Maybe society would simply say that it's up to the parents, but shouldn't the public at least address it? My personal opinion, as I have mentioned before, is that we are not only justified in resuscitating these kids, we might be practicing age discrimination if we do not, because critically ill adults and older children with the above outcome statistics would without question be resuscitated.

I don't think, though, that we are likely to see society weigh in on the issue, for two reasons. One reason is that most people are not even aware of this issue, and of those that are many are only superficially so. The other reason is that it's a very tough issue, and most people would just as soon avoid discussing it if possible. Even some parents about to have an extremely premature baby try to opt out of decision making, doing whatever we suggest or seem to suggest.

So unless John Edwards or Barack Obama has a child, or John McCain a grandchild, born at 23 weeks gestation we are like to keep resuscitating these kids, paying perhaps a million dollars for medical care in survivors, and it will almost all be under the public's radar screen. We know about heart disease; we know about cancer; we even know a little bit about sickle cell disease. But extreme prematurity is an ethical issue ignored by the public, and it is likely to remain so for a long time.

Lucky

2006-12-29T23:45:00.000-05:00

On Christmas Day I attended a cesarean section. The baby was full term and came out crying and vigorous. As usual, his birth and initial cries were met with expressions of happiness and contentment, and I couldn't help but smile at him. It was the mother's third delivery, her second C-section. She was eighteen years old.

The delivery perhaps epitomized the sum of our emotions working with these patients. On the one hand, any new life is special and can be celebrated, especially one born on Christmas Day, a holiday that means so much to so many people, both religious and non-religious. On the other hand, though, an 18 year old with three babies is just downright discouraging.

I was chatting with the obstetrician and OB resident at the nurse's station after the delivery and mentioned my disappointment that this was mom's third pregnancy. The conversation turned to young mothers with multiple pregnancies, and the obstetrician told us of a 19 year old she had seen with her 13th pregnancy, which was mind boggling even for a jaded guy like me. The OB resident - a young black woman, a contemporary of the mothers we were discussing- shook her head and said "Those women just need to be beaten."

A commenter on my previous post asked what I meant when I said "Some women degrade themselves," and other commenters noted the courage of single women for having babies instead of aborting them. As I've said before, I don't mind it so much when a young single woman comes in with her first pregnancy, because anyone can make a mistake. But when that woman gets pregnant repeatedly, time after time, she degrades herself and her children, by condemning herself to a lifetime of dependency and irresponsibility, and by starting her children in life with two strikes against them, poor and with no strong male role models around. She degrades herself because she just doesn't care about herself or her kids. As for choosing life by deciding to bear the children rather than abort them, I suspect that as often as not the reason they are not aborted is because they sought prenatal care too late to have an abortion.

On New Years Day I'll gather with extended family for the day. I'll see a variety of siblings, nieces, nephews, and great nieces and nephews, from ages 6 to about 66. We'll watch football and play foosball, and there will be lots of fun stuff to eat. It's always good to see the kids, who for the most part are well raised and respectful, except for the trash talking during foosball. It will be a surprise if most do not finish college and a shock if any are young, single parents. I can't help but wonder: Are these kids better than the 18 year old who had her third baby - or just luckier?

Peace

2006-12-22T22:40:00.000-05:00

Dear readers, I'm going to put my blog on a holiday schedule for awhile. After tonight's post, I'll take the Christmas weekend off. I'll probably write one or two posts next week, and then take the New Year's weekend off. Merry Christmas, and peace and love to everyone.

* * * * * * *

Last year on Christmas Eve our family decided on the spur of the moment to go caroling at a nearby nursing home, so we blew out the candles on the tree and drove over there. Most of the residents seemed unaware of their surroundings, and it was the kind of nursing home where that might be a blessing. Some of the residents, though, were pretty with it, and a couple of visitors asked us to sing in their rooms. One of those was a Hungarian woman who told us about her mother, a patient who was suffering from Parkinson's disease. The woman sadly said that she didn't think her mother would make it to next Christmas, and you didn't have to be a doctor to see that she was telling the truth.

At her request we sang "Silent Night." The woman started crying shortly into the song, and by the end of it my eyes were feeling pretty leaky too. Anyway, we came home to open our presents, and after seeing those patients and how fortunate I was compared to them, I really didn't care anymore what I got for Christmas.

May all of you be fortunate enough to not care what you get for Christmas. Have a wonderful holiday.

Passage

2006-12-20T21:47:00.000-05:00

Jeane Kirkpatrick, former U.S. ambassador to the United Nations, died recently. Regardless of your political persuasion: Dicit nihil sed boni de mortui.

What interested me is that the news article said she "died in her sleep", a phrase we commonly hear, and I always wonder what that means. Do people really die in their sleep, passing from comfortable sleep and dreams seamlessly into non-existence? Or do they awaken for one or two terrifying, perhaps painful moments, maybe clutching their hand to their heart or struggling for breath before they die?

I have seen many human beings die, most of them, of course, very premature babies. When they die, most often they just sort of drift off. They are asleep or unconscious because they are very sick, and we know they are dying because we see the heart rate drop on the monitor, not because there is any significant change in their activity. Sometimes, if we take them off the ventilator before their heart has finally stopped, they will take a deep gasp or two, more of a primitive reaction than a willful last stab at life, although it can be very hard for the parents to see.

With adults, though, the circumstances are often different. Sometimes they are very ill and comatose and drift off like our premies do, but other times they have a fairly sudden event, like a heart attack, or have painful last days, especially if they have terminal cancer.

I remember the first time I saw an adult die. I was an orderly during my college years in a men's ward of a hospital, and we had an elderly patient with terminal cancer who was a no code. One day as he was sitting awake propped up in bed, he just started breathing deeper and deeper, and the breaths came farther and farther apart. As the interval between breaths increased, the nurse aide and I urged him, "Breathe, Mr. Doe, breathe!", but it was to no avail. He didn't seem in pain and over a few minutes time just sort of drifted off into unconsciousness and finally didn't take another breath. It was a little weird for a 19 or 20 year old kid to see, and I still remember it vividly. It wasn't a terrible way to die and was preferable, in fact, to waking up in the dark in the middle of the night, alone with your last gasp.

"Dying in your sleep" probably means different things for different people. I don't know why I worry about it; it's not like we can choose how we go, anyway.

Waiting

2006-12-18T20:55:00.000-05:00

A Sunday or so ago I was on duty for the entire day and evening. As I walked by the family waiting room outside the NICU in the late morning I noticed a young woman, a teenager, there with a small baby and a toddler.

I didn't think too much of it, but as the day wore on I kept seeing them there. The baby looked very young; the toddler looked to be just shy of two years old, so to say he was cute is almost redundant. Sometimes when I walked by he would smile and point at me. I would point back at him and he would smile more.

Finally, in the evening, after they had been there at least ten hours or so, the mother waved me over as I walked by. "Do you work here?" she said in a quiet voice. When I replied yes, she asked me if I could get her some formula for her baby. I inquired about the baby and discovered she was only three days old. The teenager was the mother and had run out of formula.

When I went to get the formula some nurses heard about the situation and one went out to obtain more information. It turned out the teenager was here with her aunt, whose daughter was laboring in the delivery area. Not expecting to be at the hospital that long, the teenage mom had run out of food and formula. In addition to the formula, the nurses got some milk for the toddler, who had been drinking cool-aid or juice all day, and a sandwich for the mom. When asked why she hadn't stayed at home with her three day old baby and toddler, she replied that she was afraid to be alone there.

I wish I knew what to do with people like her. Spending all day in a hospital waiting room with a three day old baby and a toddler? That's almost mind boggling. Part of me wants to take her under my wing and give her a good home with lots of support, but I know that she is just one of many, and I can't take care of all of them. Also, society would look pretty askance at a middle aged guy who takes in teen-aged women who aren't related to him. And part of me just wants to keep living my comfortable lifestyle and act like I did something good by getting her a little free formula, when really, that's like just a small drop in the bucket of her problems.

Honesty

2006-12-16T11:32:00.001-05:00

In a comment on my Pawns post a few days ago, Stacy, a mother of an ex-25 weeks gestation baby, makes an earnest plea for us to be honest with parents. She means (I think) that we should not only tell them the statistics about survival and major adverse outcomes - cerebral palsy, mental retardation, blindness, deafness - but also about the more "minor" problems; her daughter, for example, has emotional problems, fine motor problems, epilepsy, and other issues. As a member of ex-premie parenting groups, Stacy knows that her daughter is not alone in having these things.

Stacy, first of all, I hear you. I agree that we must be completely honest - some might say brutally honest - with parents when we discuss outcomes of extremely premature babies. I not only tell parents the chances of a child having major or moderate disabilities, such as varying degrees of the afore mentioned CP and mental retardation, but also try to convey to them that children classified as "normal", because their motor and mental capabilities are in a normal range, still have an increased risk of what I call "soft" neurological problems, such as learning disabilities, attention deficit disorder, clumsiness, and so on.

On the other hand, though, I don't know how much good it always does, because the parents so often just don't seem to hear it. This is not a criticism of the parents; I think it's just part of what happens around the birth of an extremely premature baby. Not surprisingly, parents are not at their most rational and understanding at the time. They are both fearful about the prematurity and excited because they're having a baby. Also, the amount and type of information we have to give them about premies is difficult to take in at any time, let alone when they are in such an emotional state.

We still have to try, though, and I think most of us do. But how often do we mention it? Although I realize that we must repeat some things before they sink in, we can't be daily bombarding them with discouraging statistics. We have to give them some hope, because the fact of the matter is that there are still many reasons to be hopeful. A child may have attention deficit disorder or fine motor problems or emotional issues - but may still be the love of his or her parents' life, a huge source of happiness and fulfillment for them. (For that matter, children with mental retardation and cerebral palsy can also be a source of that joy.)

Often we are giving parents information about premature babies because they are trying to decide whether to have their extremely premature baby resuscitated or not. I understand that the prospect of a child having severe mental retardation and cerebral palsy, with a quality of life thought marginal or unacceptable by many people, can affect the decision whether to resuscitate or not - but should the possibility of having a more minor problem like attention deficit disorder make a difference in the decision to resuscitate? I'm not quite ready for that eugenic a society.

The other day I was talking to the parents and grandmother of a newly born 24 weeker. I told them the survival statistics, using both percentages (50 to 60%) and fractions (5 out of 10). I told them other outcome possiblilities, of the immaturity of all organ systems and the consequences of that. When I was done with my spiel I asked if they had any questions, and the grandmother asked, "When 24 week babies are born, do any of them survive?" I had just covered the subject in detail. Now I simply said "About half of them survive." That, I guess, is all she could handle at the time.

Pawns

2006-12-12T11:54:00.000-05:00

The note on the front of the chart read "If the father of Mary Doe's baby comes up here with any female, do not let him or her in to visit," and it was signed with the mother's name. I sighed. Once again, a mother was using her baby as a weapon in a fight with the father.

It's not that unusual and typically goes like this: The parents are unmarried and sometime before or around the birth of the baby have an argument. Maybe dad has taken up with another woman, or maybe it's something small, but being unmarried the mother has the right to control who visits the baby, and in her anger towards the father uses one of the only weapons at her disposal - visiting privileges for their child. Sometimes the parents fight and make up and visiting privileges change daily for the father, depending on the couple's status. If the parents are married or the father officially claims paternity, then the mother cannot keep the father from visiting, but those circumstances are fairly uncommon in our NICU.

Our social worker and I really don't like this, and even though it's legal for mother to do this we generally tell them they cannot do it. Let's face it; there are too many kids in urban America without a strong father or male influence in their life, and we hate to allow anything that might contribute to the father's absence from his child's life. Just because the parents don't get along doesn't mean the kid should be deprived of his or her father. Sometimes when we put it to the mother in those terms, she will let the father visit (although not necessarily the father's girlfriend, and who can blame her for that?)

It's not that we don't sympathize with the mother. Any father who impregnates a woman and then leaves her before the baby is born doesn't rate real high in my book. He's especially a rat if he shows up in the nursery with another woman as his girlfriend. But parents splitting up are a fact of life, and the children shouldn't be pawns in the disagreement between them, whether it's at birth or later in life.

Sure, the father should claim paternity, and we encourage them to do so if they want to visit, but that is not always done immediately. Also, the flip side of the father's bad behavior in showing up with another woman is the mother having multiple affairs so the father isn't sure if he's really the father. There's crap all around, but let's let the kids have two parents, even if they're not together.

I go to eat at the hospital cafeteria on Friday night and stare at the entree choices, which are lasagna, deep fried shrimp, and deep fried wing dings. Our hospital is kind or sadistic enough to list the nutritional content of them, so, theoretically, we can make healthy choices. The lasagna and shrimp both have pretty high fat contents, with the number of calories from fat hovering in the neighborhood of 50%. The wing dings, though, those fried chicken wings that are mostly fat, skin, and bone, take the cake, so to speak, with nearly 1,000 calories per serving and somewhere around 70% of them from fat. Good grief, why don't they just do a cardiac cath and inject a french fry directly into our coronary arteries?

There's an article in the December Pediatrics journal about fast food in children's hospitals. Interestingly enough, fast food restaurants are found in 29.5% of hospitals with pediatric residency programs. People who went to a hospital with a fast food restaurant in it were more likely to eat fast food, and not surprisingly the article takes a dim view of this, noting the increasing rates of obesity in America and the less than stellar nutritional value of fast food.

My point, though, is this: Who needs fast food restaurants in hospitals when you've got cafeterias like ours? Some days the meals we serve are worse than the choices in fast food restaurants. At least fast food restaurants usually have one healthy choice or so; our cafeteria sometimes has none - witness the above menu. (Somedays, when they don't have wing dings, they list french fried onion rings as an entree. An entree?)

It shouldn't surprise me too much. The cafeteria is just trying to please its customers, to sell those products that sell well, and believe me, those orders of wing dings and fries fly off the shelf like hot cakes. We are a hospital, though, and don't we have some responsibility to keep people within our walls healthy? I guess it's not surprising to me that our cafeteria sells food that's not particularly good for you; that's just life in the U.S.A. What gets me is that it serves food that is so spectacularly bad for you.

In closing, I note that my computer's home page has an article about a restaurant called the Heart Attack Grill. It's menu includes items such as the Quadruple Bypass Burger and Flatliner Fries, and, in the piece de resistance, the waitresses wear "naughty nurse" costumes featuring plenty of leg and cleavage. Nursing groups have complained about the image portrayed. Hmmm...would it offend anyone if I said I wanted to go there for dinner?

Missed

2006-12-08T15:08:00.000-05:00

The baby looked pretty good when I examined him on morning rounds, but his abdomen didn't feel quite as soft as I thought it should. It wasn't distended, though, and he had been tolerating his feeds, which generally means a baby doesn't have significant abdominal problems. I just wasn't quite satisfied with the feel of the abdomen and asked the nurse not to feed him while we observed it. About an hour later the nurse asked me to look at the abdomen once more. Again, it didn't look bad, wasn't distended or anything, but just didn't feel quite right. We obtained an x-ray and bingo, there it was: free air in the abdomen, air that should have been contained in the intestines but wasn't, indicating that he had a hole in his intestines.

We got the pediatric surgeons involved as soon as possible. They operated, found a spontaneous intestinal perforation, and removed a very small portion of intestine. The baby was pretty sick after the operation but gradually improved.

I felt pretty good, a little smug even, about picking up the problem early, before the baby developed feeding intolerance and worse abdominal problems, but then I reviewed a chest x-ray taken two days previously. There, in the little bit of abdomen that showed on the chest x-ray, was a little patch of free air. I should have noticed it then. I had missed free air two days before, letting the baby go for two days with a perforated intestine.

I felt terrible. In fact, even as I think of it again now, I still feel lousy about it. Like most doctors, I hate making a mistake that harms a patient. Sure, the baby survived, but if the perforation had been noticed two days earlier like it should have been, maybe the baby's post-operative course wouldn't have been so rocky.

The problem is that there is no good way to comfort yourself when you make a mistake like that. I try to do so by noting that the radiologist - one of the best at our hospital - also missed the free air on the chest x-ray, but that doesn't help much. I still should nave noticed it. I know that when you get a chest x-ray you should look at the chest on it last, noting the abdomen and bones first precisely so you won't miss something like this. I just blew it, and there's no getting around it.

I tell myself that as long as I learn from this, it's not completely terrible, and I did learn from it. For the next several months you can be sure I'll be checking for abdomen abnormalities on all the chest x-rays. But then, being human, my memory will start to fade, and a few years from now I might be tired or hurried, and when I get a chest x-ray not look at the abdomen....

Stink

2006-12-06T20:28:00.000-05:00

I was called to the delivery room in case there was a problem with the baby, but before the baby even made it to me from the obstetrician we could hear her crying and breathing normally. She didn't need any resuscitation, just some drying off, but there was one thing wrong with her: she stunk to high heaven. In fact, the whole delivery room stunk.

Sometimes babies will stink because they are infected or just came from an infected uterus, but that wasn't the problem here. As I rapidly looked over this baby, I found the source of the smell: there, on her upper chest and neck, were feces, the mother's feces. Mother, as she was pushing her baby out, had also pushed some of her own feces out and they had gotten on the baby. The nurse and I wiped off the feces and threw out the dirty towel, giving some relief from the smell.

This may seem gross to some of you (and it is), but it's actually not that uncommon for mothers to have bowel movements while pushing during childbirth. In fact, mothers are often exhorted by the caregivers to "push like you're going to have a bowel movement," so it's hardly a surprise that they sometimes do. Usually it doesn't get on the baby, but it still manages to stink up the delivery room.

It's just one more thing that makes me feel sorry for moms during delivery. It's bad enough, dehumanizing enough, that they have to lay there with their feet up in stirrups and their bottom exposed to the few or several people in the room, but then to have those people witness you having a bowel movement seems just downright degrading. However, I think that many women don't realize it when they have a bowel movement during delivery, and even if they do, they might not care given everything else that is going on.

I don't think I could be an obstetrician. The sight of the blood and fluids I can take, but man, the smells and sounds would bring me down real fast.

Unappealing

2006-12-04T08:48:00.000-05:00

I was in a nursing home yesterday, because as a favor we gave a ride to one of its residents, bringing him home there. He had a stroke many years ago, and the left side of his body is pretty much paralyzed. After getting him out of our car and into a wheelchair, we rolled him inside.

I almost gagged when I went through the doors, partly at the smell, but partly at the whole depressing atmosphere of the place. It was lunch time, and the smell was a combination of that of hospital food, disinfecting cleaning agents, and recently used bathrooms. Seeing the people there was almost as bad as the smell. Many were just sitting in the halls in wheelchairs, with nothing better to do. One was talking nonstop and nonsensically, another was smiling with an other worldy look on her face. The majority of residents didn't seem intact mentally, perhaps from Altzheimer's, maybe from a stroke, or maybe from previous long standing mental disease.

I don't write this to mock these people. I just feel tremendous sympathy for them; what an awful way to spend your waning years on earth. For the people who are mentally intact, it must be almost worse, because they can realize how lousy this is. And this, I might add, seemed like a fairly clean nursing home, although it was far from luxurious, making me wonder how much worse some less clean nursing homes can be.

It reminded me of one reason I went into pediatrics. It was partly because I could deal with dirty kids, maybe with smelly clothes, or babies with dirty diapers and the like, but I was somewhat repulsed by adults who were unbathed or incontinent, even if they couldn't help it. Kids are almost supposed to be dirty, at least at times like when they've been playing hard or before they are toilet trained, but a dirty or incontinent adult can be very unappealing. It's a bit ironic. When we get very old and infirm, we revert to the ways of infants and toddlers, unable to care for some of our basic bodily needs and functions. Unfortuately, we don't revert to the cuteness and hopeful potential of young ones.

When we walked out of the nursing home into the fresh air, I took a huge breath, trying to purge my lungs of the air and smell inside. "If I ever need to go into a place like that to live," I said to my companion, "just shoot me." I don't know if I really want that or not, but I would sure give it serious consideration.

P.S. Check out a new pediatric grand rounds - and a yummy recipe - at the Granola Rules.

AIDS

2006-12-02T22:00:00.000-05:00

When I was doing my neonatology fellowship in the mid 1980's, we had a baby who was HIV positive, the virus having been transmitted from her mother during pregnancy. This was early in the AIDS epidemic, and people didn't really know or understand much about how contagious AIDS was. The baby was fine but had been removed from the mother's custody and thereafter spent months in our special care nursery, simply waiting for a family willing to take an HIV positive baby into their home. I don't remember how long the baby waited, but it was sad to see a baby languish in a hospital nursery when she really should be enjoying the stimulation of a home environment.

Yesterday was world AIDS day, which gives us a chance to see how far we've come in the fight against the disease and how far we still have to go. Today I don't think an HIV baby has nearly as much trouble finding a foster home, since we know people can live alongside HIV positive people without becoming infected. Also, anti-HIV meds have been somewhat surprisingly successful, at least for those who can afford them. Did anyone really think Magic Johnson would still be alive in 2006 when he first announced his HIV status?

But we still have a ways to go. Too many people continue to be infected, and too many people cannot afford anti-HIV drugs, especially in developing countries. It seems to me that one problem in the fight against AIDS is the conflict between the individual's right to privacy and the public's right to health. An HIV positive patient can go to a surgeon for a problem not related to his HIV, say for a hernia repair or appendectomy, and he has no obligation to tell the surgeon that he is HIV positive. Sure, the surgeon and all health care workers should practice standard precautions against catching HIV, but the fact of the matter is that we're a little more careful when we know that someone is HIV positive versus when we don't know their HIV status.

If I know a mother of my patient is HIV positive, information I need to know to properly treat the baby, but the mother has not told the father of the baby, her sexual partner, her HIV status, I have no right to tell the father of the baby that mother is HIV positive even though that information could be life saving for him. It seems like an unlikely scenario, but I'm certain it happens, and is that really right? If the mother refuses to tell her sexual partner that she is HIV positive, her right to privacy, which prevents us from notifying her partner, trumps the public's right to health by enabling the partner to contract HIV. Sure, the county public health agency is supposed to help with this, but it doesn't always work. I'm all in favor of privacy rights, but it seems that in this situation a little more emphasis on public health and less on individual rights might be appropriate.

P.S. Fat Doctor has a new Change of Shift up.

Futures

2006-11-30T19:57:00.001-05:00

In a comment on my previous post, Ali asked "Do you ever feel your Herculean efforts to save these children are futile when you contemplate the futures they are destined for?" I know what she means, I think. She wonders if it isn't discouraging to realize that many of my patients will grow up to be "welfare moms" themselves, or drug addicts, or high school drop-outs, less than shining stars of society, just like their parents are. I do realize what they might be when they grow up, but nevertheless the answer to Ali's question is a resounding "No!"

For one thing, not all the kids will grow up to be just like their parents. Some of them will escape the depressing cycle of early single parenthood, inadequate education, lousy jobs, and poor self esteem. Some will make it through high school and college and become contributing members of society.

Even if they don't, though, I don't think we should judge a person by his or her station in society. People who are on the lower end of society - I don't really know how to describe them - even drug addicts, still have worth. They may be a drug addict with no productivity in life, but they are still someone's sibling, or child, or friend, and as such bring some pleasure into another human's life. They might not have a job, but they might have a great sense of humor and entertain their families at Sunday dinner, or have a good listening ear and bring comfort to another person.

But mostly, I don't mind taking care of babies who are destined for less than greatness simply because they are human beings, and I think every human being has some inherent worth. Humans are not just another animal. I can't explain exactly what makes them different from other animals, but something does, and we can never forget it. It's what makes us always take the loss of human life seriously. It's why we can never be flippant about decisions to remove life support. It's why every baby must be treated with dignity, regardless of whether they are perfectly formed or have severe defects like trisomy 18 or holoprosencephally. That doesn't mean we have to treat every baby born, even those with terrible birth defects, with heroic life support, but we have to take it seriously if we don't.

Ali, I know where you're coming from and don't mean to be hard on you in this post, but never for one minute do I think my efforts on behalf of any baby are futile.

Fiance

2006-11-28T19:05:00.000-05:00

A relative of mine recently became engaged to be married, which means that I'll have to start calling her boyfriend her fiance instead of, well, her boyfriend.

There was a time, maybe 10 to 20 years ago, when it was common for single moms to refer to the father of their baby as "my fiance." It happened so often that we used to laugh about it, knowing that many of these "fiances" would never walk down the aisle together. I think that single moms called them that as a way of lessening the perceived stigma of single parenthood. It wasn't so bad to be unmarried and pregnant if you were planning on marrying the father.

Lately, though, it strikes me that I don't hear moms use the fiance word much anymore. The fathers of the babies are referred to as simply the "father of my baby", or sometimes as "my boyfriend". Once in awhile a father is referred to as "my husband", but with more than 90% of our babies born to single moms, that doesn't happen much. I wonder if the less frequent use of the fiance term indicates a differing perception of single parenthood. Certainly nationwide the percentage of babies born out of wedlock - that seems like such a quaint term, doesn't it - is increasing. Is it no longer as great a stigma as it used to be? Or am I reading too much into not hearing the fiance word?

I remember a social worker telling me that when she heard a single mother refer to the father of her baby as her fiance, she would always ask, "Oh, when is the wedding date?" knowing there would likely be none. Too cruel, too cruel.

Contradictory

2006-11-26T20:15:00.000-05:00

"They said he would never come off the ventilator."

When I heard that the mother had said that, I just had to shake my head a little bit. How is it that parents can be so mistaken about what we told them? Sure, we told them their baby would likely be on the ventilator for a long time, but never come off? I know we didn't say that.

The mother was talking to our NICU's nurse manager. She was the mother of the baby whose arm had broken (see my previous post) and in the course of a long chat with the manager was getting some things off her chest. She also was a little miffed and confused because of how we had explained the cause of the baby's yeast infection to her. I had told her about the baby's prematurity and poor defenses secondary to that. My partner had mentioned that antibiotics can contribute to it (which is commonly thought to be true but recent evidence suggests it might not be). The mother saw these as contradictory rather than complementary explanations.

I can see to some degree how mother could be confused by that, although I'm sure our explanations included more than those two elements, but I really don't understand where she got the idea about her baby never coming off the ventilator. Was that her own fears changing her words as she processed them? As she got farther and farther away from being told the baby would be on the ventilator for a long time, did her memory fade and change "a long time" to "never"?

It's actually a fairly common occurrence, parents saying we said something we never did. I don't think it's malicious or intentional on their part. It's probably just another thing we can attribute to the stress people have when their baby is in an NICU. (Although I think there are some parents who unconsciously, or sometimes consciously, embellish their baby's story, perhaps to make it more dramatic. The number of times I've heard a parent say of a school aged child "They said he would never walk or talk" far outnumbers, exponentially outnumbers, the number of times I have actually said it.)

We'll just keep plugging away. I try to tell myself it doesn't bother me anymore when parents claim I said something I didn't, because I understand it and can rationalize it - but I really don't like lying to myself.

Fracture

2006-11-24T22:22:00.000-05:00

At the beginning of her shift the nurse noticed the baby was not moving his arm much and asked me to check it. The baby, born at 25 weeks gestation 8 weeks earlier, was still on a ventilator and pretty sick. Examining the arm, I noticed some swelling and redness in the upper arm. Father, who was there with me, made the diagnosis the same time I did. "Hey, that looks like it's broken," he said. I had to agree, and an X-ray confirmed it.

I think every NICU has had a broken arm in a tiny premie at one time or another. The very premature babies usually have relatively demineralized bones, for a combination of reasons, and it's easier to break them than it is the bones of a term baby. On the other hand, most tiny premies get through their NICU stay without a broken bone, in spite of demineralized bones, so if a baby has a broken arm, something has gone wrong. We don't know exactly when this baby broke his humerus. I suspect it occurred when he was being turned over or something like that, and perhaps his arm caught under him and snapped. The nurse wouldn't have even known it happened until the swelling started or they noticed it wasn't moving.

This was discouraging, to say the least. The parents were understandably upset and immediately started talking about transferring their baby to another NICU. I sighed to myself. We had maintained a good relationship with them through the baby's rocky NICU course so far, keeping them informed and being open with them, and it was disappointing to see that dissolve so quickly. Interestingly enough, they didn't seem that upset about the actual fracture itself but were angry that it hadn't been noticed and reported sooner (although, since we didn't know when it occurred, we don't really know how long it went unnoticed.)

It goes to show, I think, that we can never let our guard down in the NICU. You have to have a certain degree of compulsiveness to do well there. We can grow comfortable working there - we have to, or we couldn't stand it - but we cannot become complacent. You have to always be careful, whether you're writing IV orders, calculating an antibiotic dose, adjusting ventilator settings - or merely repositioning a baby with demineralized bones. Part of me is a little ticked at whoever did this for letting his or her guard down, but also, I know we all make mistakes.

The fractured bone is lined up nicely and the baby's arm should heal well. In fact, compared to the baby's lung and infection problems, plus his risk for neurodevelopmental problems secondary to prematurity, the fracture is a relatively minor thing. But for now, it takes center stage for the parents and therefore for us.

Appropriate

2006-11-22T17:10:00.000-05:00

I was feeling down. A patient at work who should be doing better wasn't, and a good relationship with a set of parents had gone a bit sour, partly through someone else's fault, but partly through my own.

On another front, the grocery store was out of a number of things, and I couldn't find any pecan rice to make my pecan rice turkey stuffing, although maybe that didn't matter because I couldn't find the recipe for my pecan rice turkey stuffing either. Now, in the fancy produce market, the "fresh" turkey I had ordered and just picked up was mostly frozen, with only a limited time before Thanksgiving to thaw it, and clementines, those seedless tangerine-like things that are a favorite fruit of mine, were outrageously priced at$7.99 per crate. Life, I thought, is a bear.

Then I heard someone say, "Excuse me, but aren't you Dr. Neonatal Doc?" The speaker looked familiar, but I couldn't quite place her or put a name with her face. "I'm Jane Doe," she said. "I worked in the special care nursery when you were at St. Mordecai's Hospital." I remembered, and we had a nice chat. She was now enjoying retirement.

Before we parted, she said to me "You know, I just wanted to let you know that I thought you did a great job in the nursery." I thanked her, and she went on. "You were always so," she paused, searching for the right word, "so...appropriate." She made my day. Then, on my way out of the market, I found a bottle of a favorite German wine, a Piesporter, for the ridiculously low price of four dollars per bottle. Things were really looking up.

Now, as I think of it, I'm not certain what it means to be appropriate, but I'm sure it's better than being inappropriate. I think I'll have a good Thanksgiving, even without the pecan rice.

Creative

2006-11-20T21:38:00.000-05:00

About a week ago I wrote about a pair of 27 week gestation twins who concerned us because of questions regarding the mother's parenting skills. Unfortunately, it turns out that we had good reason to be worried.

One week after going home one of the twins developed some apnea, a breathing problem where kids just sort of skip taking breaths. The mother brought that baby to the hospital and the baby was admitted. So far, this is not too unusual, since premature babies often need to be readmitted to the hospital after discharge. The real problem comes with the second twin. The baby was on iron drops for anemia, and there had been some problem with the bottle the iron originally came in, so someone in the home had put the iron into a regular baby bottle and put it into the refrigerator. While the mother and father were in the emergency room with the first twin, someone else in the home fed the bottle containing the iron to the second twin, apparently thinking it was juice or something. That twin developed iron poisoning and was rushed to the hospital and put on a ventilator. Her iron level in the blood was over 1,000; it's considered severe poisoning if the level is greater than 350.

When we heard about this in the NICU, we hardly knew how to react. We were frustrated with the situation, of course, and wanted to be angry at someone, but at whom should we be angry? You can't really be angry at someone for being stupid, can you? Also, it's not clear who did the damage here. Who put the iron into a baby bottle - stupid enough - and then put it into the refrigerator? Who fed it to the baby? There are several siblings of the mother in the home, and some small children as well.

Sometimes it just seems so hopeless. People are so creative in their stupidity that there is no way to anticipate and thereby prevent every possible thing that can go wrong. We can, I guess, only try to prevent kids from going to bad homes. Maybe we're a little angry at ourselves for letting these kids go to this home, but realistically Protective Services cannot and will not remove kids from this kind of home if nothing has gone wrong. We'll have to wait to see what happens now.

P.S. Check out the new pediatric grand rounds at Aetiology.

Adopt

2006-11-18T19:34:00.000-05:00

A friend asked me if I wanted to adopt 4 year old twins. A boy and a girl, they were put into foster care as newborns because of an incompetent mother. I'm not sure what her story is, whether it's drugs or what, but after four years of giving her time to get her act together, the court finally terminated her rights to the kids permanently, meaning the kids can be adopted now.

The children have been in the same foster home since birth, the home of a middle aged nun. She has by all accounts been a wonderful mother to them, and they are thriving. However, the mother doesn't want to adopt them, since she has some health problems herself, and the Catholic order to which she belongs probably would not let her adopt the children permanently anyway. Apparently they are worried about their long term responsibility if if she adopts them and then something happens to her.

I feel terrible about the prospect of these four year olds having to be taken from the only home they have ever known, to be raised by current strangers. I want to be sure they end up with a great family that will deal with and minimize the trauma that will be for them, but I can't agree to adopt them myself.

I like kids and have enjoyed raising my own kids (and still have some of that to go, which is okay with me), but now I'm at a different stage in my life. I look forward to doing things I couldn't do with small children, like maybe going on a medical relief trip (maybe Doctors Without Borders?), reading more novels, attending more sporting events, and just generally having more free time. I'm also not at all sure I could give adopted kids the same commitment to parenting I did for my own, and if I can't be a good parent, I don't want to be one at all.

Also, these kids have a quite different genetic make-up than my own. Will they, like their mother, be prone to live chaotic, maybe addictive lives? That would be very difficult to handle. Finally, and I'm hesitant to admit this, when I really question myself I wonder if my reluctance has anything to do with the fact that the kids are black and I'm not. I don't want to be prejudiced, and I try not to be, but when I imagine the kids being white, I'm embarrassed to say I have a slightly different feeling towards them - but I still don't want to adopt them.

I just hope they don't end up being passed around from home to home in the foster system. Anyone want a couple of nice kids?

P.S. I'm sorry this post is late, but my computer got into a spat with our internet service provider, and I was without computer service for awhile.

Entertainment

2006-11-15T20:09:00.000-05:00

The other night I watched Masterpiece Theater on PBS, playing a show starring Helen Mirren as Jane Tennison, a British policewoman investigating a death. The show was well done, but it had to be one of the most depressing programs I have ever seen. Name the depressing entity, and it had it: murder, teen pregnancy, possible incest, alcoholism, loneliness, death by cancer - and this was only part one. I can hardly wait to see what downers they put in part two. I kept waiting for a commercial to give us a break from the gloom, but, this being PBS, one never came.

I don't really understand why people are drawn to this kind of entertainment. I've never felt the need to look to entertainment to fulfill my quota of sad things, because I get enough of it at work. Don't get me wrong; neonatology is generally a happy specialty, and I don't deal with death and destruction everyday, but I see it enough that I don't need to see much more of it on TV or at the movies. Maybe people in other jobs feel the need to experience this stuff vicariously in their free time.

I also recently saw "Movin' Out", the Broadway style musical based on the songs of Billy Joel. I was expecting a musical play, but after the first few songs I stopped wondering when the speaking parts would come and realized it was a song and dance revue, almost a modern ballet. The band was tremendous, and I still enjoyed it, although if they hadn't put a two paragraph synopsis of the story in the program I wouldn't have been able to figure it out, except that it had something to do with love and war. (That's what I want to do for a second career: write two paragraph stories for Broadway shows and get paid a ton of money for it.) In an unwitting commentary on American sensibilities, the producers had no qualms about having the dancers simulate sex acts on stage but thought it necessary to omit the verse in "Captain Jack" that contains the word "masturbate."

I'll keep trying to find the perfect entertainment. Has anyone seen any good romantic comedies lately?

Smushed

2006-11-13T16:36:00.000-05:00

With her history of no prenatal care and 10 previous children, plus her cachectic build and the pock marks on her skin, she might as well have had "drug user" stamped on her forehead. I was called to the delivery because there was no prenatal care, and after the baby delivered and things calmed down a bit I went to talk to her.

"Hello, I'm Dr. Neonatal; I take care of babies after they are born."
"Hi," she said, "How are you?" I liked her already; the "how are you" was a nice touch from her, something I don't usually hear, understandably, from mothers who delivered a baby about 10 minutes before. After the pleasantries, I got down to business.

"How many kids do you have?"
"10."

"Are they in good health?"
"Yes."

"Do they live with you?"
"The older ones do, but the younger ones are with their father." If kids don't live with their mom, there's a high likelihood Protective Services has removed them.

"Have you ever had Protective Services involvement?"
" Yes." She was being remarkably nice and cooperative, but that soon stopped.

"Did you take any drugs during your pregnancy, like marijuana or cocaine?"
"Ohh, ooh." She started moving as if in pain. The OB resident rephrased the question, "Did you use any crack during your pregnancy?" Again the question went unanswered.

It was no surprise when her urine drug screen came back positive for cocaine and opiates, and when I called the case into Protective Services the worker said "Oh, my goodness gracious" when her previous history of protective services involvement came up on the computer screen. I couldn't help but like the woman, though, even though her lifestyle was pretty much the very antithesis of mine. She was so nice, and her baby was so cute, and she was so thankful to me, even when I explained that the baby would have to stay in the Special Care nursery instead of with her until P.S. checked out the home. She understood, having been through the drill before. It's one thing I like about this job: Sometimes you meet the nicest people at the most unexpected times and places.

On my way out of the special care nursery, I saw a spider on the wall. I smushed it with my foot.

CONS

2006-11-11T13:26:00.001-05:00

The mother was complaining, accusing the hospital of giving her baby an infection. In a way, she was right. Her baby, a twin born at 31 weeks gestation, developed a coagulase negative staph (CONS) infection at the age of ten days. CONS are bacteria that live on our skin and other parts of the environment. They cause no harm to us, but to premature babies with poor immune systems they can cause a real infection. In fact, they are the most common cause of late onset infections in the NICU.

I have mixed feelings about CONS and blaming hospital workers for transmitting CONS infections. I don't just want to say, oh well, infections happen, because there are measures we can take to try to decrease the rate of such infections, like good hand washing, and I think we need to keep trying to improve in this area. On the other hand, even with our best efforts some babies get CONS infections. I don't think any hospital has totally eradicted it from their NICU. Also, it's possible that the mother or another visitor transmitted the CONS bacteria to the baby.

The mother kept complaining and said that she should transfer the baby to the hospital across town, where her aunt works and where "they know how to take care of babies." Finally, our nurse had had enough. She asked the mother where she received her prenatal care, knowing that mother had very limited prenatal care, and knowing that she had used marijuana during her pregnancy. When asked why she hadn't gone for more prenatal care, the mother sputtered a bit and said it was because she had planned to abort the babies, but when the father went to jail she decided to have them. (We couldn't figure out that reasoning either, but hey, whatever blows your hair back.)

We know that we're supposed to be nice to parents of NICU babies, even when they are critical of us. We know that hospitals should offer good customer service. We know that having your baby in an NICU can be stressful and make you say things you might not otherwise say. But if there is one thing we have trouble tolerating, when we're doing our best to optimize these kids' outcomes, it's taking crap from a mother who didn't even care enough about them to get decent prenatal care. After all, we're only human, too.

Fantasy

2006-11-09T17:48:00.000-05:00

We've all got our fingers crossed about a baby who went home today. Born at 27 weeks gestation, she needed to be on oxygen for a long time but otherwise did very well. Her twin went home a few days ago. Our fingers are crossed because mom is not exactly a shining star. She's very nice but young (16) and a bit slow. She takes some, but not all, special ed classes. Teaching her things like the need to support the head of a baby when holding her, what a pediatrician is, and so on took extra effort. Her guardian is her grandmother who is wheelchair bound.

Social services checked out the situation. It's one of those deals where the family isn't bad enough to justify removing the children from the parent but is bad enough to make us, the doctors and nurses who cared for her, pretty worried.

In the next room in our NICU lies a baby who is very sick from an infection. I'm not sure if he will be alive tomorrow morning when I go to work. His parents are very nice and have visited him together every day since he was born six weeks ago. They seem like they would make great parents, and they'll be devastated if their baby dies.

It makes me wish that sometimes I could just switch the parents around. I mean, wouldn't it be better if the 16 year old mom, who is barely bright enough to manage routine child care, had the baby who died, and the other parents, so excited about their baby, had the twins who should do pretty well in a decent home? Don't take this to mean that I think dumb parents wouldn't feel the loss very hard if their baby died. I know they would; you don't have to be smart to love your kids. But it's just not fair. The sixteen year old, who needs a baby like she needs a hole in the head, has two, and we hope like crazy that they are resilient enough to take some subpar parenting, while the other parents might have none.

I guess we can't fix everything, and I should probably focus on keeping the six week old alive instead of fantasizing about switching parents.

Wondering

2006-11-07T20:22:00.000-05:00

In some ways my job gets easier as I get older. Advances in neonatal medicine make it easier. I have more experience and there are fewer and fewer situations that I haven't handled before. Even if there is a new problem, I have handled enough other problems that I'm pretty confident about the new one. It's also easier to talk to parents when you have that confidence.

In some ways, though, my job gets harder as I age. Yesterday was a very busy day, and there was one particular baby who was very sick and took a lot of attention. There were nearly constant concerns about him: Does he need more fluids, different antibiotics, blood, platelets? It was true critical care medicine. I enjoyed it, but when I got home I was mentally exhausted, seemingly more so than I would have been earlier in my career, although maybe I just don't remember how tired I used to get.

I've never been one to think that doctors' jobs are more stressful than those of other people. Even though we deal with health and sickness, sometimes life and death, we're trained for it, and besides, there can be significant stress in other jobs. Many people have to finish projects or reports by deadlines, or are judged harshly if they don't do their job properly, have to deal with challenging people all day, or simply have to deal with mind numbing boredom day in and day out.

Lately, though, I've been wondering if maybe my job is on the more stressful end of the spectrum. This past weekend I visited my daughter's college, and while there we went to an office of a music professor. His office included two large CD storage towers, a stereo, a Mac computer, and - get this - a large pipe organ. (Is there no justice? I've been trying unsuccessfully for a couple years to get a new combination radiant warmer/incubator that costs $30,000, while this music prof has a pipe organ worth several hundred thousand dollars.) Anyway, I thought, what a nice job he must have, and how little stress there must be. He can listen to music all day, maybe make a few tests, and teach some music lessons. Sure, at one time he probably had to attain tenure, but is that so big a deal in a small college music department?

It's not only what he has to do for his job, but also what he doesn't have to do, namely, he doesn't have to worry about getting a sick baby's oxygen level up when you've already tried everything you can think of, or deal with parents angry because their baby can't go home. There are times when his life looks pretty good, and I can't help but wonder how I'd like it.

I'll never know.

Directive

2006-11-05T21:02:00.000-05:00

The little girl had a tracheostomy as a complication of her prematurity, although her lungs were in pretty good shape. She was living with her dad, and mom is out of the picture - I'm not sure why. One day the dad stepped outside to have a cigarette. The baby, inside by herself, pulled the tracheostomy tube out and her airway closed off. By the time dad went back inside from his smoke the baby had been without air long enough to cause significant brain damage. Now the baby is hopitalized on a ventilator and in a vegetative state.

This is not, nor ever was, my patient, but is one of a pediatrician friend of mine. She told me about the case after she had just been to a team meeting of the baby's physicians and other caregivers with the father to decide what to do. The baby is stable and could go home on a ventilator, although the physicians think that given the baby's condition, removing the ventilator and letting the baby die is the most appropriate thing to do. Father is declining to do so.

After the meeting my pediatrician friend talked with the dad a little longer, one on one, and said to him, "You know, it's okay sometimes to just let the baby die," or words to that effect. She thought the dad understood the reasons for discontinuing life support but just couldn't bring himself to do it. (Of course it's tough for dad to give the okay to let his child die, not only because that's always tough to do with your child, but also because of the guilt he must feel for letting his baby pull out her tracheostomy tube.) Afterwards, though, my friend wondered if she had been too directive with the father.

I don't think she was too directive at all. Yes, we are taught to be non-judgemental about many tough decisions parents have to make, and we have to respect that, but we can't totally cop out of our responsibilities either. We physicians and nurses have seen these types of situations before; we've thought through the ethics of it and can bring some objectivity to the discussion. The unfortunate parents are almost always dealing with this situation for the first time, and, I think, need and appreciate some guidance.

I know we have to be careful with this and not be too directive (although who decides what too directive is?) Also, there are some fringe physicans and others who could abuse their influence with the parents to let some kids die who shouldn't, and vice versa, but for the most part we have something to offer to parents and would give appropriate advice. Parents are in a terrible situation when these things occur. We shouldn't force them to see things our way, but at the least we can help them think through it, and personally I think we can give them a nudge in the right direction. It's our job to help them and not just back off and stay away from the tough decisions.

P.S. Check out a new Pediatric Grand Rounds at Tales from the Womb.

Scrutiny

2006-11-03T11:48:00.000-05:00

The baby had been sick before she was born. At 29 weeks gestation mom came to the OB clinic with the baby poorly grown inside her. The baby wasn't moving much, and the baby's heart rate never varied, an often ominous sign. The heart was big and there was fluid in the abdomen. After they delivered the baby that night she continued to be sick and gave us a real workout. She was on a conventional ventilator, then the oscillator ventilator, then a conventional one again, and finally after four days was stable and needing only a moderate amount of help from the ventilator. She still had a ways to go, but was looking like a more typical premature baby who just needs to grow and mature for awhile.

It was a surprise, then, when I came in the next morning and heard my partner tell me the baby had died the night before. Nobody was sure why. The nurses had been changing the IV fluids and tubing attached to her umbilical lines when the baby coded and could not be revived.

Deaths in the NICU can be roughly sorted into a few categories. The most common kind of death is the extremely premature baby, the immature 23 weeker whose lungs and other organs are just not mature enough to make it. Simply born too early, these kids usually die within a couple hours to a couple of days after birth. Another category would be those babies with terrible chronic lung disease who survive several months but are never good enough to go home and who finally die. These don't occur often nowadays but are always hard when they do because everyone has grown attached to the baby. Some kids will die from infection, although with Group B strep treatment of the mom in labor and liberal use of antibiotics in newborns these deaths are becoming less frequent as well.

The deaths, though, that drive me crazy are the ones like in this baby, a child who is doing well when something unexpected and unexplained happens. This seems like the type of death that is the most preventable and deserves close scrutiny. As soon as I have time and the chart is available, I'll go over it closely to see if I can find any clues to the reasons for this death. I'll talk to my partner who was on duty at the time, and maybe to the nurse. I'm not trying to blame anyone; I just want to see if there is something we can learn from this, something we can prevent from recurring.

When bad things happen in the NICU, you can take one of two attitudes. You can say "Oh well, some tiny babies are bound to die," or you can try to examine the case and look for information that might give you even a tiny advantage in dealing with the next baby. I like to choose the latter approach. Paying attention to small details can help small babies survive, and that, after all, is what we do for a living.

Moustache

2006-11-01T17:59:00.000-05:00

Her baby isn't very sick and will be in the NICU only a few more days. When mother comes to visit she is polite, nice and neat, and appropriately dressed. Her eleven year old daughter, often wearing her school uniform, usually comes with her. I really like the mother, but there's just one thing about her that bugs me: she has a moustache.

I don't mean just a little darkening of her upper lip, like many women have. She has a nearly full set of bristles, a moustache that many a teenage boy would be proud to have. There's no missing it; it's really quite manly.

I don't get it. This otherwise very nice and seemingly normal woman goes around with a moustache. It's hard to believe that she doesn't notice it, because it's hard to miss. She's not the only mom I've seen like this, either. Periodically we have mothers who have a lot of facial hair. I remember one who had a very nice goatee. That is, it would have been nice if it were on a man.

I don't mean to sound insensitive here. I'm sure that facial hair is a vexing problem for many women. Also, I'm sure that many of the mothers I deal with don't have a lot of money to spend on expensive facial hair remedies, such as laser treatment or electrolysis or even hair stripping by a beautician. But still - shaving and putting a little makeup on to hide the stubble or using a dipilatory can't be very expensive. Why don't some women do that?

I realize that this is not the most serious issue we deal with in the NICU, but it is one of the most puzzling. There's an old Happy Days episode (I'm really dating myself here) where Fonzie is expounding on desirable attributes in a woman. When he says "no moustache," Richie and the boys all nod and murmur assent. I think that's a pretty universal opinion.

Paperwork

2006-10-30T20:22:00.000-05:00

The baby's great-grandmother, the guardian of the baby's teenage mother, had called me to ask if I would help them fill out some paperwork to get the baby some state sponsored insurance. It's kind of like Medicaid, but for children with special needs. She had received an application packet in the mail and seemed a bit overwhelmed by it.

When she brought it in, I had to sigh a little bit. None of us like to do more paper work. The forms, although written in the stilted formal language so typical of government applications, weren't that hard to figure out. With a little patience and persistence , she should have been able to complete them. It made me realize once again how great the gap is sometimes between me and my patients' families. I don't mean to sound arrogant, but I'm fortunate enough to be educated and intelligent. Many of my patients' family members are not, and the difference can make it hard to relate to them at times. Certainly it makes explaining NICU issues and diseases challenging, and sometimes it seems downright impossible to make parents understand.

On the other hand, I was a little miffed at the state for not making the applications easier. We know that many people in the inner city are functionally illiterate, and they should accommodate them when they design these forms. The state used to have the local health departments meet with families to complete the applications for this insurance program, but in a cost cutting move the state decided to skip that and just send the applications directly to the families. I suspect the state might have been hoping that some families would just give up on the applications, and then the state wouldn't have to pay as much for this program.

As we started going over the application, though, I noticed that this family had done a surprisingly good job with it. They had most of it completed correctly. I added some medical information to it, explained a couple of the more difficult points to them, and made sure they knew the right places to sign. I complimented them on the good job they had done.

I'm not sure why the family chose me to help them with it. Any nurse or another doctor could have done so. It was a little weird. A few minutes before I had been thinking somewhat derogatory thoughts about this family's ability or inability to complete the application; now, though, I was honored that they chose me to help them.

Greed

2006-10-28T19:51:00.000-04:00

Those wild and crazy pharmaceutical companies are at it again, doing their best to prove that the big oil companies don't have a monopoly on corporate greed. One of their latest misadventures is told in a recent New England Journal of Medicine article.

Many of you may be aware that when a drug company develops a new drug, they have exclusive rights to produce that drug for 17 years. ( I'm pretty sure I've got that figure right.) After that time other companies can make generic versions of the drug that typically sell for much less than the original brand name drug. I'm guessing, though, that most of you don't know that it's legal for the original drug company to pay a generic drug company money to not produce a generic version of the drug.

An article in the September 28, 2006 edition of the NEJM tells the story of Plavix, made by Bristol Myers Squib. Forty eight million Americans use it at a cost of more than $4 per day. (I'll do the math for you: 48 million times $4 equals $192 million per day - per day!) It's patent was about to expire, so Bristol Myers agreed to pay the generic drug company Apotex $40 million - chump change for Bristol Myers - to not release the generic version of Plavix until 2011. The deal had to be approved by the FTC and Justice Department, and in this case the deal fell through.

This is only one example of what apparently is a common practive. Although the Federal government has been trying to block such agreements, judges have often approved them. As the article says, "In recent years, such settlements have generally stuck, despite federal authorities' efforts to undo them, and generics have been kept off the market" - at a cost to consumers of billions of dollars. The full story is more complicated - I've simplified it some to fit it into a few paragraphs - and I encourage you to read the whole thing (NEJM 2006; 355: 1297-1300.)

I'm not sure what surprised me more about the article, the fact that drug companies could actually do this, or the part about the federal government trying to stop them. (The feds are actually on the consumers' side?) What's not surprising, of course, is that the drug companies will do about anything for a buck. They may be called a type of health care company, but people's health is far from the first thing on their mind.

Afterlife

2006-10-26T16:43:00.000-04:00

Healthy three month old babies shouldn't have to die, but they do, and I went to the funeral of one of them the other day. The infant son of a nurse I know, he was put to bed fine and normal but was dead when they went to awaken him in the morning.

At the funeral, which happened to be Catholic, I was struck by how much beliefs of an afterlife or opportunity to be together again sometime with the deceased are used to try to comfort the bereaved. We attempt to soften the blow of death by saying we'll see him again. I think that just about all religions, Christianity, Buddhism, Islam, Hinduism, and so on, have some belief of resurrection or reincarnation, some idea of persistence of the soul.

It makes me wonder what a funeral in a truly atheist family is like. Without any thought of reuniting with the loved one or any notion of living on in some other form, the finality of death must be stunning. I suspect that ideas like "His energy will persist," or "We'll see him in the wind and trees" or some such thing come out because we need some sort of defense mechanism against the awful thought of not seeing the person again.

I hadn't been able to go to the family visitation at the funeral home because I was working, and there were so many people at the funeral that I was a little concerned I wouldn't get to see the nurse to express my condolences. After the funeral, though, I was standing in the church lobby when she came up to me and touched my arm. As I turned to her, all I could do was say "I am so sorry," and give her a hug. In the face of such a tremendous loss, our words and gestures of sympathy seem so feeble, but they are all we mere mortals have.

Concerns II

2006-10-24T14:30:00.000-04:00

The other day in my post entitled "Concerns" I wrote about some frustration I have at times because some mothers, when told of a serious problem in their child, only seem worried about not having the baby with them, or not being able to take the baby home. It struck a bit of a nerve; suffice it to say that I was roundly criticized in the comments for my attitude. In some way, I sort of expected that. It always looks bad when an educated doctor, familiar with medicine and a hospital, criticizes a relatively uneducated mother for saying something less than wise when she's in a difficult situation for the first time.

Consider the message received, but do let me try to explain my feelings one more time. I'm aware of the reasons why mothers will do this. I know that when people are stressed they don't always say the right thing. I also know that parents often don't understand what's going on, and even if they do, don't know what to ask. I know that medications can make mothers say some crazy things, although that wasn't the case in the example I gave. I know that delivery of a baby can be an overwhelming experience. Finally, I am well aware that it is not a trivial thing when a baby cannot go to mother's room or go home with her.

Try, though, for a moment to look at it from my side. Sure, it's very important for a baby to go to mother's room with her, but it's far more important that the baby live and not die. It's important to a mother to have her baby go home with her, but it's far more important that she take a live baby home rather than a dead baby. It's important for a mother to not be separated from her baby because of phototherapy, but the importance of that separation pales in comparison to the importance of not letting her baby get brain damage from jaundice. I'm not saying mother's concerns are trivial. It's just that compared to our concerns, the mother's are, well, less significant. And parents don't always get that. And we doctors (and nurses), imperfect beings that we are, can get frustrated by that - even when we understand why mother might be saying what she is.

Let me close by saying that when talking to parents I'm an insensitive boob maybe only about ten to twenty per cent of the time. The rest of the time, believe it or not, I usually have a good relationship with parents. It's a wonderful thing to not always say what you're thinking.

General

2006-10-22T16:39:00.000-04:00

Flea's recent post about the things a general pediatrician can do without referring kids to a subspecialist put me in mind of the time I spent as a general pediatrician. I practiced it for about a year before I saw the light (realized it wasn't for me) and went into neonatology.

There are good and bad things about being a general pediatrician. The best thing is that you get to work with kids all day. They could really be pretty funny and just make your day. Some would be outgoing and glad to see you, while others would cry when you came near the door to their room. I also liked the variety of general pediatrics. You not only took care of all ages, you took care of all kinds of diseases, from infectious diseases like strep throat to the much more nebulous diseases like ADHD.

Eventually, though, the large amount of time spent on minor things, coupled with the huge amount of worry by parents about these minor things, got to me. You have to enjoy being a counselor, I think, to enjoy general pediatrics. Parents need lots of reassurance and instructions. And I don't mean this as a criticism of parents, because that's expected. When it's your own kid, even minor things seem major. Taking care of runny noses and ear infections, along with the seemingly endless stream of well child checks, just wasn't my thing.

One particular scenario bugged me the most. Mothers would often bring their, say, 8 to 15 month old child in to have the ears checked because the baby wouldn't sleep at night, and they were worried it might be an ear infection. More often than not, there was no ear infection and the baby was staying up at night because, well, that's what babies do sometimes. In such cases the parents would often be disappointed that their baby didn't have an ear infection, because then they would have had something to treat or at least to blame it on. Parents being disappointed because their kid wasn't sick: I understand it, but still, it bothered me.

I'm happy doing neonatology and at the same time am happy that there are docs who enjoy practicing general pediatrics. I have a great deal of respect for them. They work very hard, have to know a wide variety of things, and somehow have to pick out the one kid who has a serious disease like meningitis among the 100 or so kids with fevers and colds they see. My hat is off to them, but I'm glad I'm out of it.

Concerns

2006-10-20T12:48:00.000-04:00

The baby was floppy and not crying when he was brought to the infant warmer table immediately after delivery. Because he had meconium staining - he'd had a bowel movement in utero into the fluid around him - we first suctioned his windpipe. After that he was still depressed and not breathing (no surprise there) so I began giving him artificial respirations by putting a mask on his face and squeezing a bag to blow air into his lungs. He began breathing by himself after that but not very well. I ended up intubating him - putting a breathing tube into his windpipe - so we could more effectively breathe for him. He perked up after that and we brought him to the NICU and connected him to a ventilator.

Before we left the delivery room we showed him to mom and I told her that we were helping him to breathe and so on. After I said this, Mom's only question was, "You mean he won't be able to come to my room with me?"

This happens quite frequently. We tell a parent about a serious health problem in their baby and they seem only concerned with a more minor thing, like being separated from the baby for a few hours or so. I really try to give the parents the benefit of the doubt on this; I know they don't always understand what's going on, and even if they do they don't always know what to say or ask. I know it's important for parents to have their baby with them. But still, the difference in gravity between a person not being able to breathe versus not coming to your room is so great you'd think they would understand it.

I try to put myself in their position, to try to understand it better, but if someone came and told me "Your daughter is having trouble breathing and is on a ventilator," I don't think my first response would be "You mean she can't go to the football game with me tomorrow?" Not all parents are like this, of course. Others are the opposite, getting extremely worried even if you tell them about a very minor problem. It's hard to predict a given parent's response.

Later the same day the baby improved, came off the ventilator, and looked like a normal, pink, breathing baby. When I went to the mother's room to give her the good news she had only one question: "Will he be able to come home with me in two days?" Sigh.

Denouement

2006-10-18T18:59:00.000-04:00

A few posts ago I wrote about a baby with Trisomy 18. Perhaps you are wondering what happened to that baby.

At first the parents wanted everything done for the baby, including mechanical ventilation if necessary. When an echocardiogram showed the baby had serious heart defects that required major surgery, they wanted to go ahead with the surgery. The pediatric cardiologist and I each had long conversations with the parents, making sure they understood the poor prognosis of this child, even with surgery, and gently suggesting that maybe they didn't want to put the child through it.

They still wanted the surgery, so we transferred the baby to a center that does open heart surgery on newborns. After transfer and discussion with more physicians, they decided not to have the surgery. After hospice services were arranged, they took their baby home. Some people wondered who it was that finally talked them out of the surgery, but I don't think it's that. I think it just takes time for a family to come to the awful but appropriate decision to let their baby die.

I also have some follow up on a mostly unrelated matter, that of my traffic ticket. I went to court on the assigned day, and the officer said he would reduce the infraction from illegal lane usage to some lesser charge, so I wouldn't get any points on my record. The fine, though, remained the same, 130 big ones. I paid the fine and got out of there.

When baseball pitcher Cory Lidle died in a plane crash recently, I heard someone comment on TV that it put the Yankees' loss to the Tigers in the division playoffs in perspective. Similarly, the trisomy 18 baby puts my traffic ticket into perspective. The ticket is an irritation but just a small blip on the radar screen of life. Having a baby with trisomy 18, though, changes your entire view.

GBS

2006-10-16T17:04:00.000-04:00

Group B strep is a type of bacteria that resides in the birth canal of some women. During delivery of a baby, the bacteria can infect the baby and cause nasty disease - sepsis, pneumonia, meningitis - that can be fatal in some cases, disabling in others. Fortunately, we know how to reduce the risk of a baby getting Group B strep (GBS) infections. During pregnancy we can screen women for the bacteria, and if they have it, treat them with antibiotics, usually penicillin, every four hours from the beginning of labor until delivery.

So I was surprised the other day when I went to the delivery of a mother with GBS in her birth canal to find that she had been treated the night before with two doses of penicillin but then, rather than continuing it until delivery, the obstetrician stopped it, for no good reason. When I found that out in the delivery room I wanted to say "Why would you do a stupid thing like that?" but decided that wouldn't be too professional.

A few minutes later I heard from another obstetrician that the obstetrician in the above case doesn't believe in treating GBS positive women until delivery with antibiotics, seeming to think that the whole thing is a little silly and that two doses are enough. This practice on her part is - how can I put this delicately - absolutely boneheaded. There are some areas in medicine where proper treatment is controversial and different options can be within the standard of care, but this isn't one of them. The Centers for Disease Control, the American College of Obstetrics and Gynecology, and the American Academy of Pediatrics all have official statements and guidelines saying the same thing, that these women should be treated with antibiotics until delivery. It's straight forward, uncomplicated, evidence based medicine. To ignore the guidelines is to invite malpractice suits; should one of the babies develop GBS infection, she might as well just write a blank check to the parents.

I'm not sure why this OB doesn't follow the guidelines. It's hard to believe she is ignorant of them, because it is such a common thing. Also, in other ways she is a consientious obstetrician. Now, though, I have to decide what to do about it. The easiest thing for me would be to refer the case to the OB Quality Assurance committee and let them handle it. That seems a bit heavy handed, though, and I wonder if I should just take the OB aside and talk to her, friend to friend, making sure she knows the guidelines and telling her she should follow them.

But I don't think it will make any difference. For one thing, I can't really say I'm friends with her; she's a bit prickly and doesn't seem to have many friends. Also, she's got a reputation for being a little stubborn. Official guidance from the QA committee might be more likely to change her practices - and keep a baby from getting infected.

Preventable

2006-10-14T20:48:00.000-04:00

I practically begged the court referee to take the baby out of the home. Please, I said over the phone, this kid has been abused. The referee disagreed and sent the baby with the parents.

The baby had been admitted at about 6 weeks of age with a couple of rib fractures. It seems he might have had some other fracture but it was a long time ago and I don't remember for sure. Child abuse was number one, two, and three on our list of possible causes. I was a second year resident at the time and dutifully filed a report with Protective Services. The parents weren't too happy with me. I asked the P.S. folks if they wanted me to come to court to testify, but they said no, that wouldn't be necessary.

Later that day I heard the news that the court ordered the child released to his parents, which prompted my phone call to the referee who made the decision. I have to give him credit, at last he took my phone call - but he didn't change his mind.

I think that a big part of the reason this baby went home instead of to foster care was because it was a white, suburban, intact family. There were other kids in the home, I think, with no signs of abuse. If this had been a black baby with a single mom on Medicaid, I can't help but think that things would have been different.

If only they had been. About six weeks later this baby was found dead at home. The medical examiner ruled it a SIDS case, even though one of our hospital pathologists said the baby had a cut frenulum - the thing that holds your tongue to the floor of the mouth - that he said can indicate smothering. Like most pediatricians, I've seen a fair amount of child neglect and abuse, but this stands out as probably the most preventable death I've seen.

A couple of days ago Flea wrote about a family he reported to his state's protective services, and he criticized them for removing the children from the home. Maybe he's right in that case, but I don't know. We are all influenced by our past experiences; I think I'll always be one who's in favor of erring on the side of removing the kids if it's questionable.

Screamer

2006-10-12T18:20:00.000-04:00

I could hear the woman's screams from far down the hallway. She was in labor, nearing delivery, and was really losing it. When I arrived at her room, she was writhing on her bed, laying partly crosswise on it, making it practically impossible to control the delivery of her baby. Any hope for rational response to instructions had been lost long ago.

In general, there is a fairly "normal distribution" of the amount of crying and moaning that occurs during labor and delivery. As you might expect, some women are fairly stoic, while others are more animated and show more pain. I find it hard to be judgemental of any of these women. I'll never know what it feels like to deliver a baby, but I imagine it as something akin to a bowling ball coming through a very tender part of your body, so I don't blame women for showing some pain. I really don't know how I would be if I were delivering a baby.

Every now and then, though, we get a woman like the one described above, whose response to pain is far beyond the norm, who totally loses control and goes absolutely bonkers. They move around on the bed, they close their legs, they don't push; they are very difficult to care for, and their lack of control just makes it worse for them. I like to think that I wouldn't be like that if having a baby, but who knows?

It didn't help that this woman's obstetrician, who happened to be a woman, was screaming right back at her. It was almost comical to see the two of them yelling and carrying on, although the situation was a little serious for anyone to be laughing. There aren't any easy ways to make a person who's "lost it" get it back, but I really think that calm explanations and instructions have got to be better than shouting at her.

Finally the woman delivered, in spite of herself, and things calmed down. Labor and delivery can be a crazy place, and the people even crazier.

Blood

2006-10-10T11:53:00.000-04:00

Her baby had been born at 27 weeks gestation and was doing very well. She hadn't needed to be on a ventilator for long and now was cruising on nasal CPAP, which is when we blow air and oxygen into the nose and lungs with a little bit of pressure. The baby's hematocrit (the amount of red blood cells in the blood), though, had become quite low so we gave her a blood transfusion. The mother was a frequent visitor to the NICU and very knowledgeable about her baby's condition, but this day she was late and not there when we decided to transfuse. When she came in to find there had been a transfusion, she struggled to keep her composure but finally couldn't, her face cracking as she began sobbing.

This was a long time ago, at a different hospital where we didn't obtain consent before blood transfusions. Now we do and even if consent has been previously obtained I still try to contact the parents to let them know before a transfusion. Blood transfusions aren't that big of a deal to neonatologists. We do them frequently but not carelessly; they are simply part of our therapeutic armamentarium.

For parents, though, blood transfusions can stir an emotional reaction, even if they're not Jehovah's Witnesses. There's something about receiving another person's blood that really bothers some people. Part of it may be a fear of infections like HIV, but I think it's more than that. I think it's a very personal thing, taking another's blood into your own body. I don't understand it completely, but maybe it's sort of like chewing another person's already chewed gum, or licking their ice cream cone.

Over the past several years neonatologists have tended to be more and more conservative with transfusions, letting a baby's hematocrit drop lower and lower before transfusing them. I have done the same thing, although I have to admit that this practice wasn't always necessarily evidence based. In the past year approximately, two studies have examined the issue. One of them, from Iowa, suggests that this lower threshold for transfusing might not be good. The second study, from Canada and just published, suggests the opposite, that transfusing at lower levels is indeed safe.

Oh well, it's not like this is the first time we've had to deal with contradictory evidence in neonatal medicine. I'll keep transfusing when I think it's best, while all the while looking for better evidence to support my practices, and I'll definitely keep notifying parents before I do.

Generations

2006-10-08T19:48:00.000-04:00

We have in our NICU now a set of twins with a 15 year old mother. Not only was she unfortunate enough to get pregnant at age 15, she became pregnant with twins. Not only was she unfortunate enough to have twins at age 15, she was unfortunate enough to have them at 27 weeks gestation. Both were on ventilators initially but now are just on some oxygen and growing well, although they still have weeks of hospitalization to go.

I have written more than once before of my combined feelings of sympathy and frustration for these moms, sympathy for their rough life and frustration with their choices that contribute to that rough life. In this situation, though, I have to say that my sympathy certainly outweighs my frustration. This 15 year old's own mother is apparently in and out of her life. Her grandmother, who is thin and wheelchair bound, has custody of the 15 year old. It seems like this 15 year old is sort of out there on her own, left to deal with 27 week twins as well as she can.

She's doing her best. Her twins have had some typical problems of prematurity, such as a patent ductus arteriosus (a blood vessel near the heart that is supposed to close remains open), and she has tried very hard to understand that. Her twins also have some unusual brain cysts (note to clinicians: not PVL), the significance of which is uncertain, but it might not be good. It's a lot for a 15 year old to take in.

I find myself being a little miffed at the 15 year old's mother, for not being there more for her, for not giving her guidance that might have prevented this teenage pregnancy, but I also realize that 15 or 20 years from now these twins might be mothers themselves, and then who am I to blame? The current 15 year old mother? When do we go from feeling sorry for someone because their inadequate upbringing leads to problems in their life, to being frustrated at them for not bringing up their own kids any better?

Is there anything we can do to prevent these twins from following in their mother's footsteps? I think there is. Personally, I think we need to have a big push for education about birth control and preventing teen pregnancies and that this education needs to be done in the schools and with public service advertising. I won't argue with people who say that this subject should best be covered in the home. Sure, it should be, but the fact is that it is not being covered in way too many homes, and way too many people are cutting their education and chances for a better life short because of it.

Amish

2006-10-06T13:55:00.000-04:00

When I think of the Amish as a neonatologist, I think of the increased risk they run of having children with birth defects or things like dwarfism, because they are a small community and husbands and wives may be related, so their bad genes can get together and cause problems. I think of the fact that they probably don't have health insurance and that the whole community might chip in to pay a hospital bill.

Today, though, I think of the Amish in a different light. I think of the tremendous pain there is in the community that suffered the deaths of five schoolchildren at the hands of a madman. The thought of those small schoolgirls in their old fashioned long dresses and white bonnets lined up around the schoolroom, terrified by the gunman, is heartbreaking. Imagining their thoughts as they saw the gunman shoot the others and then turn the gun on them is too painful.

But I am struck by an Associated Press article I read about the Amish community's reaction to the slayings. At a time when many would be furious at the gunman and his family, the Amish are urging forgiveness. In fact, they are reaching out to the family of the murderer. One Amish neighbor comforted the gunman's family just hours after the shooting.

What a tremendous example they are for the world. Can you imagine a Palestinian offering forgiveness to a Jew after an Israeli army attack killed a Palestinian child? Or a Jew offering forgiveness to a Palestinian after the Palestinian's family member killed several Israelis in a suicide bombing? Or a Shiite forgiving a Sunni? A Hutu forgiving a Tutsi? A Northern Ireland Catholic forgiving a Protestant? Can you imagine how improved the situation in world hotspots like the Middle East would be if instead of a constant cycle of retribution, someone just offered forgiveness for a change?

I have never meant for this blog to be about religion, but I don't think forgiveness like this has to necessarily be a religious thing. It can simply be a progressive way to help to end conflicts. I'm not so naive to think that everyone will buy into it or that it will solve all the world's problems, but even if we can get people to try it a little bit it would be a good thing.

We sometimes think of the Amish as being backwards and old fashioned. We might laugh at them for not using electricity or automobiles; but in this aspect they are way ahead of the rest of the world.

Eighteen II

2006-10-04T16:51:00.000-04:00

The baby had the typical features of trisomy 18: small mouth, clenched hands, narrow, tight hips, abnormal ears and feet, and so on. She would likely have the same natural course of babies with trisomy 18 if we did not intervene; 50% of them die within the first week of life, 90 to 95% die by age one year, with the survivors being severely mentally defective.

I had spoken to this mother prenatally about a month earlier, after her baby had been diagnosed by amniocentesis with trisomy 18. At that time she said she wanted everything done for the baby. Tonight, after the baby was born and they had a chance to hold the baby for a good while and see her, I talked to mother and father again. After congratulating them and telling them the baby was cute (because she was) and inquiring of the baby's name, I told them the baby unquestionably had trisomy 18. I told them the grim statistics about trisomy 18 and that many of these babies simply stop breathing and pass away. We discussed what they wanted done should that occur, and mother emphatically said she wanted everything done, including intubation and mechanical ventilation, including an IV if needed for hypoglycemia.

When she said that, I just felt very tired, and not only because it was 2 a.m. I was tired of having to discuss this with parents; I was tired of the parents trying to disbelieve the truth about their baby, tired of them not wanting to deal with the hard questions, tired of them not seeing my point of view, which is that we should allow nature to take its course in these situations. I've seen babies with trisomy 18 before, and I've seen many babies on mechanical ventilation, and I just don't think the two should go together. Why put an innocent child like this through needle sticks, IV starts, the trauma of having a tube rammed down their throat when it's not going to make much difference?

I know this probably sounds terrible, to complain of being tired at a time like this. I know it's not about me, it's about the baby and her family. I know the baby is a human being, and because of that we shouldn't take letting her die lightly. But I also know I've seen this picture before and have gone through the ethical and moral questions in my mind many times, while the parents are doing so - or maybe not doing so - for the first time.

The father said to me, "It's in your hands." Ah, if only that were true.

P.S. I wrote the above at about 3 a.m., right after talking with the parents. As I read it now in the light of day, I realize it might sound a little harsh. Don't worry, we did the right thing and are treating the family and child with dignity and respect. I also should say that I respect the opinions and rights of those parents who have done everything for their trisomy 18 kids, including heart surgery; their pictures and stories of the kids as they grow give me pause. But I guess I just want to share how it looks from our side sometimes.

Language

2006-10-02T12:48:00.000-04:00

The mother labored, close to delivery, while the obstetrician and nurses called out instructions and encouragement. It was a big baby and they had to use a vacuum to get the baby's head out. Mother had been making the usual sounds, some cries and questions, but just before delivery she suddenly shouted "WHAT THE F---!?" She repeated the phrase a little louder, just in case anyone in the hospital had missed it the first time, and followed it up with some choice scatalogical terms.

It struck me as she said this just how rarely I hear that term in the delivery area. In an area filled with high emotion and people in pain, I practically never hear the F word, although I didn't realize that until I heard it at this delivery. I'm a little surprised by that. You would think we would hear it commonly as an exclamation - not only because it's a common expletive but also because the F word and pregnancies share a common origin.

I'm not sure why we don't hear it much. I mean, I'm sure our patients have it in their vocabulary. Yet, in the labor and delivery area, cries to an almighty being far outweigh the use of the F word. Don't get me wrong: I'm not asking to hear it more, just puzzling briefly over it's scarcity.

This mother had more unusual language, too. As mentioned before, this was a large baby, weighing more than 4 kilograms, more than 9 pounds. When told this the mother asked "Is that why it hurted so much?"

Yes, the nurse said, that's why it hurted so much.

Good grief - it's contagious.

Parent

2006-09-30T15:54:00.000-04:00

The other day I went to the funeral of my sister-in-law's mother, an 80 year old woman who had suffered from Altzheimer's disease for several years. She had shut down almost completely about a month ago, no longer eating or speaking, and by the time death came it was a bit of a relief.

At the luncheon after the funeral, a brother of the deceased approached me and introduced himself. He was a dentist and had heard that I was a neonatologist. He told me of a son that he and his wife had 50 years ago who was born at "eight months" along. The baby had breathing problems and died at the age of one day, and the dentist wanted to know if there had been any progress made in the treatment of such babies and diseases.

I told him that yes, tremendous advances had been made, and that a baby like his if born today would likely be a relatively easy case. I told him about the advances made with mechanical ventilation of babies in the late 1960's and 1970's, and of the advent of widespread use of artificial surfactant in the early 1990's.

Although he seemed pleased to hear about the advances, he had a somewhat wistful expression on his face, and I said to him,"You never forget about your baby, do you?" He seemed relieved to have the sentiment acknowledged and started talking more about his dead baby boy. He told me that his son just couldn't seem to catch his breath, and he was reminded of it when he saw his Altzheimer's impaired sister take her last breaths. After our conversation he thanked me and we went our separate ways.

Fifty years ago a small baby lived for one day, and every single day since then his father must have thought of him. There is, I think, no stronger attachment than that of a parent for his or her child.

Judgements

2006-09-28T20:26:00.000-04:00

I just finished reading the book The Memory Keeper's Daughter, a novel about an orthopedic surgeon and his family. The story begins with the orthopedic surgeon having to deliver his own wife of twins because a blizzard makes it impossible for them to get to the hospital. The first twin is a fine boy, but the second twin he recognizes as having Down syndrome and tells a nurse to take her to an institution. Instead, the nurse takes her to another town and raises her as her own child.

There are a few unrealistic things in the book - the idea of an orthopedic surgeon making an instant, certain diagnosis of Down syndrome is a bit far fetched; usually we pediatricians are looking at a baby and trying to decide whether the child really has Down syndrome or not, and wait for the chromosomes to confirm it - but overall it was quite good. It gave some glimpses into what it might be like to raise a child with Down syndrome, showing both some of the heartaches and triumphs. The part I found most striking , though, is when the twin brother, who previously has felt sorry for his sister because she has Down syndrome, comes to the realization that he need not pity her because she is quite happy and content with her life - perhaps even more so than he is.

It reminded me of a study done in Canada looking at very premature NICU survivors who were now teens. Although they had some challenges in life, both mental and physical, their feeling of self worth was actually greater than that of a control group of "normal" teenagers. Happiness did not depend on how smart or well coordinated you were.

I like that lesson - happiness does not depend on intelligence - but I wonder how far we can extend it. Certainly there are people with mental retardation, either from Down syndrome or other causes, who lead happy, fulfilling lives. But is there not a limit to how impaired one can be and still have a happy life? I know that some parents of children with Trisomy 18, kids who are much more impaired than kids with Down syndrome, believe that their children are happy, and although it seems to me that Trisomy 18 children have to suffer a fair amount in life, who I am to contradict that? What about more impaired children, though? Kids with Trisomy 13 are usually even more impaired than Trisomy 18 kids. I remember one from my residency who had lived unusually long, to the age of 13 years, and he always seemed miserable.

I don't have the answer to this, but I'm going to be very careful when making value judgements about what lives are worth living.

Communication

2006-09-25T20:09:00.000-04:00

I was called to go STAT to the delivery room. Unfortunately they didn't tell me what delivery room, but I found it anyway. It turned out they had brought mom to the c-section room for a "double set up", where they could do a c-section right away if needed. The baby was three minutes old when I arrived. When they brought mom back to the c-section room, they called everyone but the neonatal team.

Fortunately the baby was doing well. He was a 25 weeker but was breathing fairly well on his own. We brought him to the NICU and put him on nasal CPAP -think of it as blowing air and oxygen into the baby with a little bit of pressure - and he looked fine and dandy.

Before I left the delivery room I briefly showed the baby to mom and dad and told them I would talk to them in more detail once we got the baby settled in the NICU. I again saw them briefly when they went through the NICU on the way to mom's room, and I told them I would be out in a few minutes, once mom got settled in her room, to go over everything with them. When I got to mom's room, she was there with a friend, but no dad. "Is the dad here?" I asked. No, he had gone to the store.

I sighed a little; I guess dad didn't think it too important to hear about the baby. So I went over everything with mom: the approximately 75% chance of survival; the possibility of needing a mechanical ventilator; the need for an IV for likely 4 to 5 weeks (maybe less if he does really well;) the possibility of bleeding into the brain; the increased chance, versus if he had been born full term, of a neurological problem; and several other things, including a pitch to have her pump her breasts to feed the baby.

All in all, it was the kind of talk I wish the father had been there for, because he should hear this stuff and because I really didn't want to go over it all again. Sometimes the father comes later and wants to hear it; I try to tell them, but having done it once, I know I condense it the second time. It can get a little frustrating, especially when you make an effort to get parents there at the same time.

Sometimes I've talked to mothers at the bedside or in their room, and after I go through a long spiel they say, "Can you tell that to my husband , too? He's just outside in the waiting room." Now you tell me?

Before I left the mother of the 25 weeker I asked her if she had a name picked out yet. She said yes, he would be a junior. I waited, thinking she would tell me the name, since I didn't know dad's name, but nothing more was forthcoming. Finally I asked and she told me.

I sighed again. Some days communication is just tougher than other days.

P. S. Grand Rounds is up at Healthline.com and Pediatric Grand Rounds is up at Pediatrics Info.

Sue

2006-09-24T16:25:00.000-04:00

If a nurse or doctor sees medical malpractice occur in her NICU, should she tell the parents to sue?

I think of a case that happened about 18 years ago. A baby was born very prematurely at 23 to 24 weeks gestation and weighed very little, about 500 grams. I remember that the survival statistics at that time showed about a 10% chance of survival for this unfortunate child. We got the baby through the first three weeks of life, but then, in spite of our best efforts, she developed an infection and died from infection related renal failure. It was a not atypical way for such a premature baby to live and die.

One of the NICU nurses thought she detected malpractice and told the parents to sue. Sure enough, one of our town's most prominent malpractice attorneys came sniffing around and deposed a few of us neonatologists. After he found, appropriately, that no malpractice had occured, he and the hospital settled for a small amount of money, (about $10,000, I think) enough to cover the attorney's expenses up to that point, but small enough that it wasn't worth the hospital's time to fight it further. There was no admission of guilt by the neonatologists or the hospital.

I think the nurse told the parents to sue because the physician chief of that NICU had recently been demoted and a new chief brought in. Some of the nurses remained loyal to the old chief and were happy to keep the pot stirred up. I think the nurse really thought malpractice had occured, but she was biased and also not knowledgeable enough to determine whether malpractice had occured. I mean, it's not likely malpractice when a baby with a 90% chance of dying actually dies. Her telling the parents to sue did no one any good, except the attorneys involved. It just sustained the parents' grief, rather than helping them deal with the sad loss of their child.

I don't know whether a health care worker should tell the parents to sue if they see malpractice occur or not, but I do know this: You had better be sure you know what you're talking about, or else you'll look like a jackass and lose some friends and your job, which is what happened - appropriately - to the nurse in this case.