The Stormy Legacy of Baby Doe

Should the Government try to save severely afflicted infants?

On April 9, 1982, an infant who became known to the world only as Baby Doe was born in Bloomington, Ind. He had an incomplete esophagus and Down's syndrome, which causes moderate to severe mental retardation. Thanks to advances in neonatal medicine, surgeons could ensure Baby Doe's survival by attaching his esophagus to his stomach, but nothing could be done to prevent retardation. His parents were confronted with an agonizing dilemma: to assent to an operation that would save the life of a child who could be hopelessly retarded, or to allow him to die of starvation. Against the wishes of their pediatrician and hospital, they chose the latter. The parents' right to this choice was twice challenged in the courts by the hospital and twice upheld. On April 15, Baby Doe died.

His legacy is today one of the most fiercely debated controversies in medicine. At issue: how to protect the rights of severely handicapped infants, and what role the Federal Government should play. Locked in the battle are three factions-doctors, handicapped citizens' groups and right-to-life organizations. Last week, as the Reagan Administration reviewed its stand, it came under concerted attack by the medical profession in the form of two blistering editorials in the prestigious New England Journal of Medicine.

The Baby Doe debate was ignited by the President. Outraged by the case, Reagan ordered the Department of Health and Human Services to ensure that handicapped infants would receive proper medical care even if their parents or physicians were willing to let them die. In May 1982, the department informed the nation's 5,800 hospitals that they could lose federal funding if they withheld treatment or nourishment from handicapped infants. This edict was followed by a tougher regulation requiring hospitals to post large signs in public places bearing the inscription "Discriminatory failure to feed or care for handicapped infants in this facility is prohibited by federal law." The posters provided the number of a 24-hour, toll-free hotline for anonymous informers who wanted to report violations to federal investigators.

Doctors and medical organizations were outraged by this unprecedented intrusion of the Federal Government into matters that traditionally have been settled privately between physicians and parents. The new rule implied that doctors and parents could not be trusted to act in the best interest of a handicapped child. No less infuriating to physicians was the rule's assumption that all congenital defects could be handled in the same manner, that any child's life, no matter how tenuous, painful and illfated, should be sustained for as long as is technically possible.

The American Academy of Pediatrics, the American Hospital Association and a number of other professional organizations took the HHS to court over the Baby Doe rule and won. District Court Judge Gerhard Gesell last April found the regulation to be "arbitrary" and "ill-considered." Three months later, HHS issued revised regulations, which conceded that there was no need to impose "futile therapies" on terminally ill infants.

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