Unless a family has experienced the birth of an "abnormal" child, it is hard to imagine how painful and stressful that situation can be. The natural reactions to that stress and pain take many forms. Perhaps the most natural and most common response is to turn to the medical profession with the cry of "Make our baby whole!"
Recent articles and letters about anencephalic infants do not and perhaps cannot deal with this pain, or with the response it evokes in the medical establishment. What is missing, in my opinion, are the questions not being asked. Questions like: How many "normal" mothers giving birth to "normal" children are not receiving any medical attention at all? Specifically, in the United States, in the year 1988, how many mothers and how many children are receiving neither adequate nutrition nor adequate pre- and postnatal care?
To the degree that this question is asked, much less answered, the answer seems to be that if one pediatric heart surgeon did one less heart transplant, be it human or baboon, not one dollar more would go to medical services for those not presently being cared for. And, to my mind, this is the real bread-and-butter ethical issue that we as a democratic republic need to ask ourselves: Why do we, the most wealthy and by our own self-perception the most enlightened nation in the world, perhaps in all of history, choose to ignore the health needs of millions of mothers and children? Why do we lag behind so many other nations?
It therefore seems inappropriate that the issue of which child gives and which child receives some organ becomes the focus of ethical concern. I believe this focus should be directed at another question entirely: Why do we permit so much of our wealth be spent on such activities, rather than on the basic health care for mothers and children of modest means?
This is not an easy question to answer; it is not enough to just say no to cost-intensive medicine-for-profit. It requires, as well, that we accept more responsibility for our own health care and to the system that provides it. If we insist on making demigods of our physicians, they will for the most part accept that role. What can we do for ourselves, and what kind of support do we need from our medical professionals? I believe that our acceptance of this responsibility can alter both the quality and the quantity of medical services we get for our tax and insurance dollars, and resolve many of the ethical issues as well.