Blogiversary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.