A Kid With Something Extra
Ricky is 19 months old and doesn’t like me. Oh, he’s friendly enough if he has his clothes on and his parents are holding him at a safe distance. He babbles and delights his audience of the moment, but when I have to do my doctorly stuff he gives me as much as I can handle.
Some people would say he has no business being here. For one thing he came through two life-threatening heart surgeries very early in life. And then there’s that “extra” thing, a 47th chromosome that marks him as a Down’s Syndrome child with a distinctive appearance which makes children so afflicted look more like each other than like their siblings.
You don’t see as many people with Down’s nowadays because about 80% of them are aborted. They were often institutionalized in the old days and were expected to be weak and retarded. When chromosome analysis became available routinely, the rush was on to eliminate as many defective babies as possible; ergo amniocentesis, especially for pregnant women over 35.
In my early life there were 48 chromosomes and 48 states. I think it was an American assumption. But about the time Alaska and Hawaii made it fifty, the human cell was found to contain 46 chromosomes, which in biology is a rather peculiar number. There are the two sex chromosomes, X and Y, and 22 pairs of others – usually. Down’s Syndrome has an extra #21. Turner’s Syndrome occurs in females with one X only. There are other “trisomies” involving 17/18 and 13/15, generally recognizable at birth and incompatible with life (the only one I cared for actually lived over a year).
Ricky’s mother was 41 and her obstetrician insisted on an “amnio” but with the moral certitude of a woman unburdened by an Ivy League education she said no. She would play the cards she was dealt. As her pediatrician I had qualms because I knew the medical problems he’d likely face, starting with his most serious cardiac defect. But there was no moral hesitancy on my part any more than on the part of his parents.
This weekend I read an article on bioethics that reminded me of others I had read years ago, regarding Nazi Germany before World War II. For about 12 years in the 70′s and 80′s I edited and produced a newsletter for the medical staff of my hospital. My editorials were as provocative as I could make them. The doctors older than I usually loved them and the younger doctors called me all sorts of names, but they read them. My last one was about a psychiatrist from Boston who had been a Holocaust survivor and had described how the German medical community of the 1920′s often did Hitler’s work for him by justifying the isolation and extermination of individuals whose lives were “unworthy of life”, from deformed babies to homosexuals, elderly and insane, and later Jews, gypsies, communists, and anyone judged expendable. It was the awful “slippery slope” fueled by scientific zeal to purify the race. (Did you know that Margaret Sanger, founder of Planned Parenthood, was an ardent admirer of Hitler and his eugenics program?) That editorial was too much for the CEO of our hospital; he fired me because my editorial was “way too controversial”, even though I took most of it (with due credit) from the New England Journal of Medicine!
Ricky is a delight to his family, to me and my staff, to all the many medical people he has come across. He has a right to his life. I don’t know if he’ll be able to attend regular public school or be self-sufficient when he grows up, but I don’t know that about my other toddler patients with 46 chromosomes either! I am sure he’ll be a gentle soul whose family and community will be better off with him. We’ve also learned how heartless institutional care can destroy the emotional, physical and intellectual development of children born normal but deprived of love, as in Victorian English foundling homes or more recently in Romania and China.
Doctors have significant power over peoples’ lives, even in this age of the internet and “patients rights”. I’ve sat on Bioethics committees and heard an appalling lack of any moral compass from not only physicians but lawyers, social workers and executives and even clergy who confuse themselves with Him Who created us all equal and in His Own image.
Seven years ago President Bush was under fierce pressure to give a green light to federally funded embryonic stem cell research. Inevitably this would involve creating new human embryos for research (i.e. destruction). With the extensive involvement of his Bioethics Task Force chaired by Dr. Leon Kass of my alma mater, the University of Chicago, and Dr. Robert George of Princeton, he stood his ground, permitting only already existing lines to be used. Almost $2 billion in private funds later, embryonic stem-cell research looks more and more like a blind alley, whereas stem cells from much less controversial sources turn out to be far more promising. Even the New York Times begrudgingly admits that that was Mr. Bush’s finest hour.