Hiatus

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

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

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

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

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

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

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

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

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

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

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

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.