(Cross-posted at My Left Wing
In today's New York Times is an article reporting on a study of the outcome of very premature babies. The implications, personal and political, are vast. It touches on the "culture of life", the politics of reproductive rights, who makes medical decisions for a family and what information the family is allowed to have in making those decisions.
Children born prematurely at weights of 2.2 pounds or less during the 1990's have high rates of mental and physical disability, despite advances in treatment that doctors had hoped would improve their conditions, researchers are reporting today
Although such infants were much more likely to survive than those born in previous decades - the survival rate was 70 percent in the 1990's, compared with 50 percent in the 1970's and 80's - they were just as likely to suffer from significant disabilities.
Asthma, cerebral palsy, vision and hearing disorders, low I.Q., poor school performance and social difficulties are among the problems described in The Journal of the American Medical Association by doctors at Rainbow Babies and Children's Hospital in Cleveland. Such disabilities were far more common in the children born prematurely than in normal-weight children from similar backgrounds. For example, 38 percent of those born prematurely had I.Q.'s below 85, as opposed to 14 percent of the normal-weight children. Among the premature, 21 percent had asthma, compared with 9 percent of those with normal weight.
"We were astonished by the high number who had at least one of those things," said Dr. Deanne Wilson-Costello, an author of the article in the journal. "The majority had some kind of special need."
The article evokes many reactions from me. My youngest son Ian is a surviving twin, born at 30 weeks gestational age, and at 2 lbs. 15.5 oz, so he does not meet the criteria of the babies in this study. His twin brother Rhys, who weighed 3 lbs. .5 oz., died at 3 days of age from necrotizing enterocolitis (that means his intestinal tissues died from a massive and rapidly progressing bacterial infection).
Ian has high-functioning autism. I have often wondered if some of the increase in autism rates comes from the increased odds in preemie survival. I have never seen a study which addresses the issue specifically, but it would be interesting to know -- could prematurity, or the medical interventions necessary to survival, be a triggering event for the development of autism for those who are genetically vulnerable? Is autism included in the "social difficulties" referred to in the article?
Deciding whether to try to save such premature babies, given their high odds of having serious disabilities, has been a wrenching issue for decades.
"Over the last few years I think the trend has been for more intervention with these very tiny babies," said Dr. Richard Polin, the director of neonatology at Morgan Stanley Children's Hospital of New York-Presbyterian. Decisions are usually made by doctors and parents on a case-by-case basis, Dr. Polin said, adding that most hospitals would strongly recommend trying to save babies 26 weeks and over. Below that age, he said, many doctors will lay out the risks for parents and give them the option of not pursuing treatment.
"It's extraordinarily controversial, what I'm saying," Dr. Polin said. "Some people will get incensed about giving those families a decision about whether to go ahead." At some hospitals in North America doctors try to save babies as young as 22 weeks, but some European countries tend to draw the line at 26 weeks.
Dr. Wilson-Costello said she did not think the new findings would change the trend in North American to treat smaller and smaller babies. Instead, she said, the main issue raised by the study concerned "getting society ready to cope with these kinds of kids and their survival."
Dr. Wilson-Costello said that although the study findings might influence some doctors' thinking about whether to try to save infants, parents would be less likely to act on the basis of data.
NEC developed atypically with Rhys. Generally, the disease advances over a period of days, or at least many, many hours. With Rhys, the first symptom -- bloating -- was charted at 4:00 a.m. (the babies in the NICU are checked hourly). Standard medical procedure is careful observation, because most often the problem resolves itself without any intervention beyond switching to intravenous nutrition, rather than gavage feeding of formula, to allow the intestinal tract to clear out and rest. However, Rhys's condition deteriorated rapidly, and he was scheduled for surgery by 9:00 a.m. Surgical intervention involves removing the necrotic sections of tissue and resectioning of the bowel, with various levels of success. If the damage is extensive, the baby may be kept alive for weeks, months and, sometimes, more than a year. With Rhys, by the time surgery started, almost his entire intestinal tract was gone. The surgeon was, thankfully, blunt about the prognosis, and we couldn't imagine using every intervention to keep our baby alive just to watch him slowly die, never leaving the hospital. We let him go, and he died at about noon that same day.
Read the emphasized text above again. In the United States, one of the tactics in the war on reproductive rights has been the pushing back, further and further, the definition of "viability", no matter what the cost to the families and the babies -- and the societal costs. To fully inform parents, and "allow" them to make the choice to not pursue further intervention, is seen as abhorrent and should not be countenanced. I imagine these same people would contend that we "killed" our baby by letting him go peacefully.
Here in the United States, I believe there is an unfortunate tendency to underplay the complications of prematurity. We read of the "miracle babies", born at less than a pound, going home with great hoopla and hurrahs -- even though the babies are usually still hooked up to intravenous feeding tubes, or some other sort of artificial nutrition, and attached to an oxygen tube. If everything goes just right and the child bucks the odds, there will be another laudatory article when the child enters school, or graduates from high school or college.
But if something goes wrong, if the child dies or develops profound disabilities, that's the last we hear of the child, except for an article in the New York Times, reporting on a study in a medical journal. We don't read the stories of the individual failures, which may give the parents of premature children a more realistic outlook on the probable future for the child, and the stresses that future will put on the family.
Many of these children, I am sure, are Terry Schiavo multiplied a thousand times over. What is important to too many is that they are alive, not that they have a chance to live.