In 1983, the American Civil Liberties Union and various disability rights groups were on opposite sides of a resounding battle over the extent of the medical care being given Baby Jane Doe, a Long Island infant with spina bifida. The organizations representing the handicapped supported the federal government's demand for the infant's hospital records in order to find out if she was being discriminated against because she was handicapped. The ACLU, on the other hand, vigorously supported the privacy rights of the parents. The courts decided to leave Baby Jane Doe alone.
Two years later, however, the ACLU has formed an alliance with the Spina Bifida Association of America, the Association for Persons with Severe Handicaps and the National Legal Center for the Medically Dependent and Disabled in charging discrimination against handicapped infants. Actually, the charge this time is terminal discrimination. The handicap in the current case is spina bifida once again, and the handicapped association claims that life or death decisions about such infants have been made at Oklahoma Children's Memorial Hospital in Oklahoma City on the basis of "indicators such as race, socioeconomic class and educational level of the family as well as perceived parental fitness."
It sounds like a Ray Bradbury homily, but part of the evidence is an article by some of the alleged perpetrators in the October 1983 issue of Pediatrics, the journal of the American Academy of Pediatrics. The authors were all members of a medical team, and their article describes the results of a research program they conducted from 1977 to 1982 at Oklahoma Children's Memorial Hospital. The team was working on criteria for deciding which spina bifida infants to treat and which to let go, as the euphemism has it. The babies chosen to continue in this life were given what the authors call "active vigorous treatment." That is, surgery to close the opening in the spine and, when necessary, the insertion of a shunt to drain spinal fluid from the brain.
Those infants given the black spot by the medical team were provided no more than "supportive care." No surgery, no antibiotics to cope with infections, and no active treatment for other acute illnesses during the babies' final days.
The lawsuit claims that infants with identical physical conditions were given drastically different futures by the medical team. As the team's article in Pediatrics itself states, in evaluating the infants, a lot depended on "the contribution from home and society." If the kid was luckless enough to be born on the wrong side of town in an age when more is spent on missiles than on the needs of the handicapped, he and his parents would presumably be better off if sweet death came to bring the infant to a better place.
According to the disability rights organizations and the ACLU, these merciful criteria of selection were not disclosed to the parents. They were told that the decision not to give active vigorous care was a medical judgment and in view of that judgment the parents were not obligated to have the child treated. If, however, a parent insisted on going all the way, the doctors would comply. But most of the parents did go along with letting their babies go, because doctors know best.
When the results of the five-year project fell into place, all but one of the infants receiving vigorous treatment survived. (The exception was killed in a car crash.) Of the 24 babies who were given only supportive care, all died. As the medical team triumphantly said in its article, "the 'untreated survivor' has not been a significant problem in our experience."
The civil-rights class-action suit is being brought to end this form of irreversible discrimination and to secure medical malpractice damages for the parents of two infants. One died during the research project; another was finally treated, but so late that much damage had been done.
The defendants state that despite what the article in Pediatrics says, no spina bifida infant was denied full treatment because of nonmedical factors. Nonetheless, the hospital has continually refused to show any of the medical records of the infants in the program. Yet the confidentiality of such records is supposed to protect the patient, not the doctor.
Children's Memorial Hospital administrator Tony Padilla told the Daily Oklahoman that the problem is that the article in Pediatrics was "terribly written." It is hardly the quality of the prose that is at issue. It is the notion that anyone has the right to end a life because its presumed future "quality" may not be up to the standards of the compassionate executioner.