Mongolism, Parental Desires, and the Right to Life

MONGOLISM, PARENTAL DESIRES, AND THE RIGHT TO LIFE* JAMES M. GUSTAFSONf The Problem THE FAMILY SETTING Mother, 34 years old, hospital nurse. Father, 35 years old, lawyer. Two normal children in the family. In late fall of 1963, Mr. and Mrs. ------ gave birth to a premature baby boy. Soon after birth, the child was diagnosed as a "mongoloid " (Down's syndrome) with the added complication of an intestinal blockage (duodenal atresia). The latter could be corrected with an operation of quite nominal risk. Without the operation, the child could not be fed and would die. At the time of birth Mrs. —— overheard the doctor express his belief that the child was a mongol. She immediately indicated she did not want the child. The next day, in consultation with a physician , she maintained this position, refusing to give permission for the corrective operation on the intestinal block. Her husband supported her in this position, saying that his wife knew more about these things (i.e., mongoloid children) than he. The reason the mother gave for her position—"It would be unfair to the other children of the household to raise them with a mongoloid." The physician explained to the parents that the degree of mental retardation cannot be predicted at birth—running from very low mentality to borderline subnormal. As he said: "Mongolism, it should be stressed, is one of the milder forms of mental retardation. * This paper was written at the request of the Joseph P. Kennedy, Jr., Foundation in response to the "case study" included and additional information, for its Symposium on Human Rights, Retardation, and Research, October 16, 1971. It is an extended version of The Johns Hopkins case study. t University Professor of theological ethics. University of Chicago. Perspectives in Biology and Medicine · Summer 1973 I 529 That is, mongols' IQs are generally in the 50-80 range, and sometimes a little higher. That is, they're almost always trainable. They can hold simple jobs. And they're famous for being happy children. They're perenially happy and usually a great joy." Without other complications, they can anticipate a long life. Given the parents' decision, the hospital staff did not seek a court order to override the decision (see "Legal Setting" below). The child was put in a side room and, over an 1 1-day period, allowed to starve to death. Following this episode, the parents undertook genetic counseling (chromosome studies) with regard to future possible pregnancies. THE LEGAL SETTING Since the possibility of a court order reversing the parents' decision naturally arose, the physician's opinion in this matter—and his decision not to seek such an order—is central. As he said: "In the situation in which the child has a known, serious mental abnormality , and would be a burden both to the parents financially and emotionally and perhaps to society, I think it's unlikely that the court would sustain an order to operate on the child against the parents' wishes." He went on to say: "I think one of the great difficulties, and I hope [this] will be part of the discussion relative to this child, is what happens in a family where a court order is used as the means of correcting a congenital abnormality. Does that child ever really become an accepted member of the family? And what are all of the feelings, particularly guilt and coercion feelings that the parents must have following that type of extraordinary force that's brought to bear upon them for making them accept a child that they did not wish to have?" Both doctors and nursing staff were firmly convinced that it was "clearly illegal" to hasten the child's death by the use of medication. One of the doctors raised the further issue of consent, saying: "Who has the right to decide for a child anyway? . . . The whole way we handle life and death is the reflection of the long-standing belief in this country that children don't have any rights, that they're not citizens, that their parents can decide to kill them or to let them live, as they choose." THE HOSPITAL SETTING When posed the question of whether...