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Baby Fae: a life.

Like a poem in the familiar epigram, a baby's life should not mean but be. Baby Fae was not given that simple existential luxury of infancy. The lives of other children acquire meaning slowly, in families, play, school and work. But almost from birth, her tenuous life was burdened with ehtical controversy, medical significance and social consequences. Nor did death provide its customary oblivion. Baby Fae has entered history as a public figure, a subject for study and debate.

The case of Baby Fae, as distinct from the tiny girl herself, arose in a cultural context that is understood no better than the genetic dysfunction that deformed her heart. American society seems to be in a state of extreme anxiety about its children. Abortion, birth defects, child abuse and infant sexuality make front-page news, enter political campaigns and serve at the material of made-for-TV movies. Parents and Presidents plead for organs to transplant in dying infants, and big-name entertainers instruct youngsters about how to avoid molesters.

The government--its lawmakers, police and educators--is alternately blamed for children's distress and implored to find a cure. Huge amounts of money are sought for crash medical programs to correct rare illnesses and defects. Extraordinary restrictions on personal freedom are mandated to prevent infrequent assaults. With hardly a dissenting voice, for instance, New York City has begun the compulsory fingerprinting of 100,000 child-care workers after a score of children were reported to have been sexually mistreated. Families, in the abstract, are scolded for their neglect of children's welfare; at the same time, the courts (as in the case of Baby Jane Doe) are asked to assume the parent's role in making health and welfare decisions.

Some social psychologists theorize that modern times have separated parents from their children to such a degree that the elders look on the youngsters as strangers, as "others" over whom they have diminishing control. The resulting guilt and alienation produce a certain paranoia beyond the normal concern of parents for their offspring. Next comes the search for villains: in the streets, the schools, the political movements that seem to favor mother's rights or fetal ones. And miracles: in reseach laboratories, operating rooms and the houses of Congress. Cyclosporin-A, the immunosuppressive given Baby Fae to reverse her rejection syndrome, was the wonder drug of the week at the same time that the fingerprinting program was touted as the miracle cure for child abuse.

Ethicists have come to the forefront of medical practice as the issues of fetal and neonatal rights fill the media. But while they carefully pick over questions of individual freedom and welfare, little is said about the social ethics that sometimes appear in abrupt contrast to the personal ones. Baby Fae's picture was in the papers and on the news broadcasts in conjunction with images of mass starvation in Ethiopia. Who weighed the ethical considerations of spending a half-million dollars for a single interspecies cardiac transplant against devoting that much cash for food to save thousands of African babies? In Baby Fae's case, scientists and surgeons proved they could reverse the effects of embryonic deformities in one baby for three and a half weeks. But in the crush of media excitement over that one procedure, no one seemed interested in the environmental backdrop--the mutagents in the atmosphere that cause defects in uncounted fetuses.

Medicine has had its mythic aspects in every human society. In ours it is assuming the proportions of pageantry. Baby Fae's brief life-became a circus, quite apart from the useful medical lessons and important ethical considerations it presented. That is too bad for the helpless child and her parents--and for all of us.
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Publication:The Nation
Article Type:editorial
Date:Dec 1, 1984
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