On June 30, 1983, U.S. Surgeon General Dr. C. Everett Koop issued a revised “Infant-Doe” Regulation aimed at “protecting handicapped infants from illegal discrimination in receiving health care.” The regulations are a response to the 1982 Baby Doe case in Bloomington, Indiana, in which a newborn with Down’s syndrome was allowed to starve to death after his parents refused corrective surgery on his esophagus.
A similar regulation was struck down on April 14 by U.S. District Court Judge Gerhard Gesell. The American Academy of Pediatrics, the National Medical Center had charged that the Reagan Administration failed to follow proper administrative procedures for establishing the rules, that among other things they failed to follow administrative procedures for establishing the rules, that among other things they did not include a time period for public comment as the procedural ground for overturning the original regulation (PLN July, 1983).
The revised regulation allowed for a 60- day period of public comment that ended on September 6. The new regulation, smaller in size (8-1/2″ x 11″), is to be posted at nursing stations rather than in public areas. The sign’s wording is identical to the earlier version and states, “discriminatory failure to feed and care for handicapped infants in this facility is prohibited by federal law.”
The revision clarify the scope and intent of the regulation and encourage greater participation of local child-protective agencies in investigation. In part, they state, “Section 504[of the Rehabilitation Act of 1973] does not require the imposition of futile therapies which merely temporarily prolong the process of dying of an infant born terminally ill… At the same time, the basic provision of nourishment, fluids, and routine nursing care is a fundamental matter of human dignity, not an option for medical judgment.”
A 24-hour toll-free hotline (800-368-1019) for use by medical personnel and private citizens has been In effect since the original regulations and continues to be provided in the new ones.
Approximately 700 calls were taken into the hotline a month after it began operating. About twenty cases have been investigated since the hotline opened in March. Dr. Koop reported that three calls requiring investigation were received on the “Baby Doe Hotline” during the two weeks preceding his announcement of the new regulations. All three cases involved denial of surgery. Two of the cases were reported by nurses. One was a child born with a hydrocephaly requiring anal surgery; the other two were children born with spina bifida. Dr. Koop said all three children are doing well.
The editorial in the September 15 New England Journal of Medicine slams the regulations and the Academy of Pediatrics struck by publishing in Pediatrics (Vol. 72 No. 1) a commentary by Peter Singer, animal rights activist. He says, “If we compare a defective human infant with a nonhuman animal, a dog or pig, for example, we will often find the nonhuman infant to have superior capacities, both actual and potential, for rationality, self-consciousness, communication and anything else that can plausibly be considered morally significant. Only the fact that the defective infant is a member of species Homo Sapiens leads it to be treated differently from the dog or pig. Species membership alone however, is not morally relevant. If we can put aside the obsolete and erroneous notion the sanctity of al human life, we may start to look at human life a sit really is: at the quality of life that each human being has or can achieve.”
The Association for Retarded Citizens, in conjunction with the American Coalition of Citizens with Disabilities, the Down’s syndrome Congress, the Spina Bifida Association of America and The Association for the Severely Handicapped support the regulations saying the new rule “seeks to enforce a basic civil right of handicapped infants.”