Status

The blip of the siren and the flashing lights on the police car behind me told me I was busted. Good grief, I thought, I can't believe they're pulling me over for this. Due to construction, I was stuck in a long backup. I had to make a left turn about half a block ahead, so to speed my way up I went into the left turn lane and drove the half block in it. Unfortunately, I went into the left turn lane too early, crossing a double yellow line, and the cop got me.

The cop took my license and went back to his car to do whatever they do in there, probably look to see if I'm in the serial killer data base. I've got a good driving record, so I wasn't too worried. As I sat waiting for him, my mind wandered to a conversation we had in the doctor's dining room a few weeks ago. Several people had recounted their experience getting traffic tickets, and a couple told how they tried to use their physician status to get out of a ticket. One doctor, a radiologist, even admitted that he had lied to a cop and said he was on his way to an emergency at the hospital, when he wasn't, and amazingly the cop bought it and let him go. Personally, I find such behavior a little despicable, both lying and taking advantage of your M.D. status.

Now as I sat in my car, though, I wondered: would he go easier on me if he knew I was a doctor? I knew I couldn't lie and tell him I was on my way to an emergency at the hospital. For one thing, I could never pull off a lie like that, even if I wanted to, and for another thing, I was clearly heading into a shopping center - wearing shorts and a polo shirt. But still, could I use my status to somehow influence him to let me off without a ticket?

I pulled my hospital I.D. badge out and placed it in the center console, with my name, face, and the MD clearly showing in the path he would have to look into when he looked through my driver's side window. I felt a little funny about it, though, and chickened out in the end. When he started to walk back to my car I flipped the ID badge over, so he couldn't read it.

He gave me a traffic citation for an illegal lane change that costs 125 bucks. (What a rip off! When did tickets get so expensive?) He was nice, though, and implied that if I went to court for it he might let me off. I know I did the right thing by not telling him I was a doctor, but still, it was quite a temptation. Maybe I should wear my hospital I.D. badge when I go to traffic court....

Down II

A few days ago I published a post about Down syndrome, specifically about telling parents that their child has Down syndrome. Although there were some nice comments, there were several that gave me some flak. Normally I just let such criticism slide off me, but I think some of this criticism was unfair and feel duty bound to defend myself.

The main criticism seems to be that I was being too pessimistic, or not giving the parents enough hope. Anecdotes about high functioning Down syndrome patients were used to convince me, I think, to give a proposed better outlook for kids with Down syndrome. I was accused of setting limits on what the child could accomplish. One commenter told me to stick to the medical facts and use up to date sources. Another said I had an "insulting and demeaning attitude" about Down syndrome. Hmmm.....am I really that much of a creep?

When I talk to parents of Down syndrome children I tell them congratulations and make comments about how cute their baby is, just like I do with parents of kids with 46 chromosomes. I agree that parents should try to optimize their child's development. I try to be as positive as I can, but I can't act like everything is hunky dory, as some commenters seem to want. I "dispense the facts of Down syndrome," as one commentor requested, and those facts are, as given in the 2006 edition of Smith's Recognizable Patterns of Human Malformation, that the average IQ is 25 to 50, perhaps lower in older patients. There is about a 40% chance of a heart defect. Sure there are some exceptions, but when I counsel parents I have to do so on the basis of facts and studies, not on the basis of anecdotes about exceptions.

There are no parents who take the news that their child has Down sydrome as good news, regardless of how it is presented. They universally consider it bad news - many of them go through a grieving process - and that's not because we present it in a negative way, that's because the news that your child will have intellectual deficits and a higher risk for things like heart defects, leukemia, and atlanto-axial instability is not good news. And the way to give bad news to parents is not to try to cheer them up with anecdotes about exceptional high achievers, but to give them accurate information and point them in the right direction for optimizing their child's development.

Should I modify my talk so I tell parents that there are some unusual exceptions who go to junior college? Maybe, although I'd like better evidence than a comment on a blog that it is true. Also, please realize that in my patient population it is more common for a young black man to go to jail than to college. Those exceptional cases who go to college aren't likely to come from my patient base. Perhaps I should just say that with optimal developmental stimulation some Down syndrome kids are doing better than historically we thought they could.

I don't have much good to say about people who discriminate against those with disabilities, but neither do I have much use for doctors who wimp out on tough conversations with families by giving overly optimistic information. The commenter Karrvakarela said it best: "There is no room for false hope but we need to advocate a positive attitude to the condition."

Odds

We sent two babies home on oxygen recently. Both were very premature, 23 or 24 weekers. Both had young single moms who visited often and did as much care as possible in the hospital. (Both also had fathers in jail.) Before we send such babies home with oxygen, we try to educate the parents and train them so they know all the care of their baby, including how to feed and give meds, and how to take care of the equipment. The equipment companies also teach them how to use the necessary equipment, which in these cases included oxygen tanks, nasal cannulas, and apnea monitors.

When we send such babies home, though, I always cross my fingers, say my prayers, knock on wood and generally just hope like crazy that something doesn't get screwed up. It shouldn't be so hard to take care of an oxygen tank, nasal cannula, and apnea monitor. The companies make them pretty easy to handle, at least it seems that way to me. But the number of times something goes wrong is irritatingly high.

One of these moms called us about two days after discharge, complaining that she was running out of oxygen. When the home care company checked things out, they found that the oxygen flow was set on 2 liters per minute instead of one-quarter liter per minute, so it was running out 8 times faster than it should. I don't know what happened there; maybe mom got 0.25 and 2 mixed up. Maybe she didn't know that 0.25 equals one-quarter.

The other mom called us to say her son's meds had run out, and would we write a new prescription for them. I asked her if she had seen her pediatrician yet, since she has to make the transition to her outpatient doctors (although I did give her new prescriptions.) She told me that she had decided to switch pediatricians, so instead of keeping the appointment we made with her pediatrician one week after discharge, she instead made an appointment with the pediatric clinic at the university hospital. That wouldn't be a problem - except that the appointment was for six weeks after discharge, and this baby needed closer monitoring than that. At least she kept her appointment with the pulmonologist, who wrote in her letter to us that mom didn't even know how to turn the apnea monitor off.

I sigh just thinking of this. We take care of these kids for 3 or 4 months in the hospital, and then just hope their parents don't screw up. And if they do screw up, we'll probably get blamed for not providing enough education. All the education in the world, though, doesn't seem to be enough for some moms.

Every now and then one of these babies dies a sudden death at home, and then I just want to pound my head against the wall. Life is a crap shoot, and some babies have better odds than others.

Assist

I saw in the news the other day that Switzerland is worried about becoming the assisted suicide capitol of the world. Apparently it has liberal laws regarding that and more and more people are making it a destination for their final trip in life. I guess they're worried about what effect it might have on their regular tourist industry.

I've got some ambivalence about assisted suicide and euthanasia. There are some situations where I think most people would agree it's okay to help death come. I think of a small very premature baby who clearly is not going to make it. We decide to remove her from the respirator and let mom hold her in her final moments. In such instances, it seems appropriate to me to give the baby a little morphine, to relieve any pain and perhaps to relieve any discomfort or panic as the baby feels what must be like suffocation. We know, though, that morphine depresses a baby's breathing efforts and may actually hasten death. Is it, then, euthanasia or analgesia? Mercy killing or merely pain relief?

In adult assisted suicides, I worry about possible abuses that could happen, such as children pushing it on an elderly parent they don't want to take care of; or a depressed patient doing it when he really just needs psychiatric help for his mental illness; or someone whose chronic pain hasn't been treated properly and who needs proper analgesia, not death. Jack Kervorkian - one of the true clowns of our time - demonstrated that all those things could and would occur if assisted suicide became legal.

On balance, I think assisted suicide is a step a little too far down a slippery slope for my taste. I feel bad for people who legitimately want out of this life, but if we make a mistake in assisted suicide, we can't take it back.

P.S. Check out the latest Change of Shift nursing blog carnival at Emergiblog.

Memories

I dined out in a resort town the first night of my vacation and there she was, sitting about 30 feet away. She had been the mother of 27 week twins in the pre-surfactant era, when respiratory distress syndrome could really knock a baby down and out, and unfortunately it knocked out her twins. The first died at a couple weeks of age, a few hours after a PDA ligation. (Note to clinicians: we checked, they ligated the correct vessel.) The second one suffered a large intracranial hemorrhage and became severely impaired before dying at age four years. They were not pleasant years for the mother. I remember her coming to the NICU to talk to us and ventilate her frustrations long after her baby was out of the NICU, when she was hospitalized on the pediatric ward for one thing after another. She was a nice lady in a tough situation.

But that was long ago, and now she was dining with a party of four: herself, a man her age, and two teenage girls, probably her family. She looked like she was enjoying herself and was likely on vacation too, like everyone else in that town, and in a way I felt a little bad for being there. I don't know if she saw me or not, but if she did it would bring back bad memories, interrupt her now normal life, and I didn't want to be the cause of that, especially while she was on vacation. It wasn't my fault, of course; it was just a serendipitous occurence. I couldn't help but keep glancing at her, wondering if she saw me, and if she did, wondering if she would come and talk to me. After a while, though, I was able to concentrate again on my spicy chicken sandwich and beer and enjoy my meal.

Her party left before we did. She walked within about 10 feet of our table, and she didn't look at me, let alone come and talk to me. That was okay with me, whether she recognized me or not.

Down

"Are you saying there is no chance that the baby will have normal intelligence?"

I looked at the baby, at her flat face and slanted eyes, and noted the protruding tongue, the Simian crease. Most of all, I remembered the chromosome report: Trisomy 21.

I looked the grandmother in the eye. "That is correct," I said.

Telling a family their child has Down syndrome is never fun, and this session wasn't one of my best. Mother was taking the news extremely well, but she had been prepared by her pediatrician and another neonatologist, who had told her that on a clinical basis her baby most likely had Down syndrome. Grandmother, though, looked a little ticked off, and father was just very quiet. I don't think they had heard the previous talks that mom had.

I wish I knew what families in this situation want to hear, because whatever I say seems so inadequate. I know they want the truth, which we give them, but unless they know someone with Down syndrome it seems a little hard to explain it to them. Also, of course, there is the normal variation in severity that we cannot predict. Often the family wants some hope, some chance that the baby will turn out normal after all. Although I usually don't like to take all hope away from a family, in this situation we simply cannot tell them there's any chance their baby will be normal. Then there's the whole chromosome thing, and trying to explain to the parents how this happened. The conversation can easily swirl down into one confusing mass, or at least it seems that way to me.

So I told them one bit of truth, something I hoped would cheer them up a bit. I told them about a patient I had back when I was a general pediatrician, a six year old with Down sydrome who was my favorite patient. She had frequent ear infections, and would always come to see me very excited, bouncing around pointing at her ears and telling me to look in them. She was absolutely delightful; I couldn't help but laugh every time I saw her.

But what is cute at age 6 is less so at 16, and even less at 26.

Vacation

Believe it or not, I am on vacation again. I plan to resume regular posting on August 20 or 21, if there are still any of my readers left. Have a good week.

Congo

As I write this the conflict between Israel-Hizbollah-Lebanon continues full force, although there is progress towards a cease fire agreement. I am sure that most of my readers share with me sadness at the tremendous loss of life and property as well as hopes for a swift cessation of hostilities there.

Although the above conflict has dominated the news for the past month, at least until the British arrested the airline terror suspects, it is not the deadliest armed conflict in our world today. I think the fighting in the Congo, which seems to have near perpetual civil and regional warfare, would qualify as that. I have read that the loss of life in the Congo is at a pace of 100,000 people per month. That sounds high, but even if it is greatly exaggerated it would still be more lives lost than in Israel and Lebanon. Not all the deaths are the result of direct combat; many are because of famine and diseases that persist because it is impossible to develop any sort of infrastructure given the many years of war there.

Yet we hardly ever hear news about the Congo. It is rarely on the front page of my newspaper and usually not even in the first section, and I can't help but wonder why. Is it because there are no nuclear weapons in the nations involved in the Congo fighting? Is it because the fighting is not near any large oil reserves? Maybe it's because the combatants are black and not Caucasian. Or could it be because we are all so tired of the news from Africa of poverty, hunger, disease, war, and corruption that we have given up on the continent?

I'm not sure of the answer. As in most complex situations, it is probably a combination of factors. But it hardly seems fair, does it? The death of a young Congolese child grieves his mother as much as the death of a Lebanese child does his.

Misogyny

I dialed the 17 year old mom's number to tell her something about her baby. The phone clicked and in a coarse sound with lots of static a song played "Ooooh, ooooh, come into my bedroom...." Is it just me, or is that perhaps not the most appropriate song for a greeting on a teen mom's phone?

It puts me in mind of a study just published in the August issue of Pediatrics. The study looked at the sexual habits of a group of teenagers. It surveyed them at baseline and then two or three years later. It found that the kids who listened to music with sexually degrading lyrics were the ones who increased their sexual activity the most. Please note, lyrics about sex and romance didn't increase the sexual activity; it had to be degrading lyrics, like lyrics that talked about women as whores - or ho's- and other misogynist things.

Perhaps you saw this reported in the lay press. It was widely reported that sexually degrading lyrics caused kids to increase their sexual activity, but that is not what the study showed. It said that listening to such lyrics was associated with increased sexual activity, and association is a horse of a different color than causation, although that distinction is often too subtle for the lay press. It's very possible that the degrading lyrics didn't cause the increased activity. Maybe it's just that kids who were going to have increased earlier sex activity anyway were the same ones who happened to like such music.

Mind you, I suspect that such music probably does at least partially encourage kids to have earlier sex. It's pretty well established that watching violence on TV makes kids more violent, and I think the same is true for sex on TV, although I don't keep up with that literature. But this study didn't prove it. Nevertheless, I'm glad my kids like the Barenaked Ladies, who in spite of their name sing pretty clean songs, instead of some "artist" who prefers to sing about women as rough sex objects.

Change

I have written before about the ethics of resuscitating babies of 23 and 24 weeks gestation and of my discomfort at allowing parents to decline resuscitation of a 24 weeker when there is a 55 - 60% chance of survival and 25% chance of severe disability, especially when there would be no question of resuscitating and treating an older patient with those odds. At the risk of alienating readers by repetition, I'm going to talk about it again, because the July issue of Pediatrics has a letter entitled "Advocating for the Very Preterm Infant", which basically agrees with my point. It's kind of exciting for me, because this is the first time in my memory that I've seen such a piece in the medical literature.

The letter is written by Drs. Annie Janvier and Keith J. Barrington, neonatologists from McGill University in Montreal, in response to a previous article discussing guidelines for resuscitation and non-resuscitation of extremely premature babies, an article in which the majority of medical staff members at an NICU in Portland, Oregon did not recommend NICU care, but just palliative care, for infants born at 24 weeks. Dr. Barrington is a well respected neonatologist, one invited to write editorials and give talks at prominent conferences. The letter speaks of "the ethical duty of the perinatal team to the infant about to be born." The authors note that a one month old infant with group B strep meningitis or a 50 year old neonatologist with an extensive stroke, both of whom have survival and disability chances similar to those of a 24 weeker, would likely have "immediate resuscitation and institution of care without any discussion of withholding intervention". Why, then, is it acceptable to not resuscitate 24 weekers?

Judging from comments on my previous posts about this subject, the majority of readers strongly feel that it should be the parents' decision to provide aggressive care or not. (Actually, it's not clear from the letter whether the authors think all 24 weekers should be resuscitated or whether they think it should be the parents' choice.) I know that's the prevailing thought, but I'm still not sure it's appropriate. It is plain and simple age discrimination when we don't resuscitate 24 weekers when we would resuscitate patients such as those mentioned above.

Drs. Janvier and Barrington have a little twist in their situation. Not only are they neonatologists, but they are also parents of a baby born last year at less than 25 weeks gestation. They write "Every day that goes past we are grateful to our colleagues here" for resuscitating their baby.

In the 1980's it took a Baby Doe case and government intervention to force people to repair such defects as esophageal atresia in Down syndrome babies, instead of just letting them die because they had Down syndrome. Although I really prefer to not have the government involved, I wonder if we need another Baby Doe case this decade to change our paradigm and insure aggressive treatment of 24 weekers.

Decision

A long time ago, in a hospital far, far away, a woman was about 16 weeks pregnant. An ultrasound showed that her female baby (fetus?) had gastroschisis, a birth defect where the intestines are not enclosed in the abdominal cavity but protruding through a defect in the abdominal wall and are floating in the amniotic fluid. This is a repairable defect, and sometimes the surgeons just need to put the intestines back in their place and close it up, and everything is fine. Sometimes, though, the repairs don't go quite so smoothly, and it may take a long time for the intestines to start working, or some may be lost and the baby left with a short bowel. One good thing about a gastroschisis is that unlike many birth defects, it is not typically associated with other anomalies, such as brain anomalies that can cause neurologic problems and abnormal development. (Don't confuse this with an omphalocoele, a different defect that also has the intestines outside the abdominal cavity, but that often is associated with other nasty defects.)

As was the practice in that hospital, the woman was invited to a multidisciplinary conference attended by the family, a perinatologist, pediatric surgeon, neonatologist, social worker, and genetic counselor. The purpose of the conference was to explain the defect to them and tell them their options: continue the pregnancy and keep the baby; abort the fetus; or continue the pregnancy and give the baby up for adoption at birth. The family decided that they didn't want to take a chance of having a problem child and chose to abort the fetus.

I attended many conferences like this. As physicians we were to be non-judgemental and not tip off the family to our own preferences in the case. Personally, I didn't really like seeing this fetus aborted when I had seen many kids with gastroschisis repaired and live a fine life, but hey, it was the family's decision, and it was legal.

The case headed towards a scheduled abortion but hit an unusual snag. The family was from the Middle East. It was no secret that they valued a male child more than a female. In fact, they led us to believe that if this were a male fetus they would have continued the pregnancy and kept the child. This was too much for one of the perinatologists, who - although she was generally in favor of families being able to abort any fetus they wanted to - tried to stop the abortion on the grounds that it was gender discrimination.

Casea like this were often somewhat discomfitting for me. It wasn't that unusual for a family to decide to terminate a wanted pregnancy because they couldn't be sure the baby would be perfect. Kids with mild spina bifida, mild enough that they could walk, would be aborted. Kids with repairable defects would be aborted. As a pediatrician and neonatologist, I spend a not insignificant portion of my time taking care of babies with defects. It was a little weird seeing them just terminated. Obviously, one's thoughts in these cases are colored by one's thoughts about abortion in general, but that's a topic for another day.

The perinatologist was unsuccessful in blocking the abortion. Hey, it was the family's decision, and it was legal.

Tagged

Dear readers, sometime last week my blog passed the six month mark. It has been lots of fun blogging, especially seeing the comments, but I'm running out of things to say about neonatology and the social aspects of it, or whatever this blog is about. So today I'm just giving notice that sometimes from now on I'll stray from the medical subject field. I'll still write mostly about things related to neonatology and pediatrics, but now and then I might throw in a political post, or tell you about a good book or meal, or whatever. I hope you're not too disappointed.

For today's post, I have been tagged by ex utero, aka Dr. Phillip Gordon, who writes fiction and non-fiction over on his tales from the womb blog. It would be rude of me not to play, and hey, it gives me something to write about.

One book that changed my life: The Catcher in the Rye. I know, others have used this too, but if you read it at the right age - say, 15 or so - it was really, really good. I re-read it a couple of years ago, and it didn't seem nearly as relevant.

One book I've read more than once: All By Myself, by Mercer Mayer. I read this to my kids over and over. Actually, I could have chosen any number of kids' books. Nowadays, I don't have any little ones to read to, which has advantages and disadvantages. As Carly Simon said, these are the good old days.

One book I would want on a desert island (besides How to Build An Ocean Going Boat for Dummies): The Remains of the Day, by Kazuo Ishiguro. My favorite book.

One book that made you laugh: Julie and Julia, written by a young woman who sets out to make every recipe in Julia Child's Mastering The Art of French Cooking.

One book that made you cry: I honestly can't think of a book that made me cry.

One book I wish had been written: Things You should Know at Age 25 That You Don't Learn Until Age 40 or So. Doesn't everybody wish they could have a few do-overs?

One book I wish had never been written: I might take a little flak for this, but I'm going to say the Koran. I apologize to any moderate and thoughtful Muslim readers, but it just seems to me that radical Islamic fundamentalists are causing all kinds of trouble in this world.

One book I am currently reading: Everything Is Illuminated, by Jonathon Safran Foer. It's hilarious in some parts, pretty boring in others.

One book I am meaning to read: The Memory Keeper. I don't know who it's by, but I saw it at Border's and it looks pretty interesting. It's about a guy who gives away a twin with Down syndrome at birth.

Five people to tag: Hmmm.....

1. Fat Doctor
2. Paedsrn of Mediblogopathy. Welcome back, buddy. Try to stay out of trouble.
3. Dream Mom
4. Surgeon in my Dreams of Medicine, Animals, and a Dream
5. Any one who feels like playing!

HiB

Okay, class. Everyone who has seen a case of Hemophilus influenza type B (HiB) infection in the last ten years, please raise your hand. No one? Good.

When I was a resident in pediatrics in the 1980's (I know, I'm getting pretty old), I spent a great deal of my time taking care of kids with HiB (a bacterial infection, not to be confused with "the flu", caused by influenza viruses). I saw kids with HiB cellulitis, HiB meningitis, HiB epiglottis, and just plain old HiB sepsis. It's not a pretty disease. The meningitis can cause brain damage and/or hearing loss, and some HiB infections cause the most feared complication: death. I saw so many HiB infections that I wonder what pediatric residents do all day now, since HiB took up a major part of my time.

Okay, class, second question. Do you know why no one in our class has seen HiB disease in the last ten years? Because we developed a vaccine for it that has nearly eradicated the disease from developed countries. It's been great to see; in my career, I've seen a vaccine developed and then stamp out a terrible disease, just like earlier generations of pediatricians saw vaccines wipe out terrible diseases like polio and small pox. When you've seen the scourge of a disease, you're especially grateful for the vaccine.

Maddeningly, there are still some people who are opposed to vaccinations, such as my ex-brother-in-law and Muslin Imams in Nigeria, where polio still kills kids because the Imams say polio vaccine is part of a plot by the U.S. to harm kids. It's crazy. People claim that vaccines are not safe, but that's not really the question. The question is, which is safer, vaccines or taking your chances with the diseases? Unquestionably, the vaccines are. Even if you believe a lot of the malarkey that anti-immunization folks say - most of which is not true - it would still be safer than getting, say, measles, or pertussis (yes, we still see these diseases) and certainly safer then getting HiB disease.

And if you don't believe me, I could probably find you some parents from my residency days who are still grieving their kid's death from HiB.

NO

The New England Journal of Medicine last week had two articles about the use of nitric oxide in premature babies. Nitric oxide is a drug that we have known for years is very helpful in some full term babies with respiratory failure. Over the past several years there have been studies investigating whether it is also helpful in premature babies, with so far mixed results. The articles published in the NEJM last week seem to support its use in premies, with one study showing improvement in the incidence and severity of bronchopulmonary dysplasia, the chronic lung disease that premies get, and the other showing fewer complications like intracranial hemorrhage in the nitric oxide treated babies. An accompaning editorial acknowledges the promise of nitric oxide for premature neonates, but wisely, in my opinion, recommends that it be studied further before it is used routinely for them. (Nota bene: We're talking about nitric oxide, not nitrous oxide, a gas used for anesthesia.)

I'm not sure what's going to happen with nitric oxide in premies. I suspect that eventually it will be shown to be beneficial in at least some subset of premies. But the thing that gets me about nitric oxide is its cost. It starts at $3,ooo dollars per day, with a maximum charge of $12,000 over 30 days. Even in NICU's, used to stratospheric charges, that's a significant chunk of change. If nitric oxide babies go home earlier than others then some of that cost can be recouped, but still....$3000 per day?

I have mixed feelings about drug companies these days. They fund and make possible some very large and good studies, such as the ones that studied artificial surfactant, studies that may not have been done otherwise. But they charge outrageous prices for new drugs, as well as do dirty tricks to keep patents from expiring, and run misleading ads and the like. I know they need to regain some of the costs involved in drug development, and I know the companies' executives primarily answer to the stockholders, but profits in the hundreds of millions of dollars when some people can't afford drugs - and when HIV drugs are out of reach for some in developing countries because of their cost - is well, um, well, scandalous.

This is a big subject, and I am hardly the first to complain about it, so I'll stop here. But doesn't it bug you, too?

P.S. I wish I could say it's good to be back from vacation, but frankly, I'd rather still be lying on a sunny beach.