A Father Speaks

by Bernard Bard and Joseph Fletcher.

MY SON, Philip, was born at 11:20 A.M. on December 2, 1962, at Booth Memorial Hospital, Flushing, New York. The pediatrician, Dr. F., a youngish man given to bow ties, met me in the corridor of the maternity floor. It was a boy, five pounds, thirteen ounces, he said, but added: “I’m not totally satisfied.”

The vital organs were functioning normally, said the doctor, but there was something about the facial features, the extra-wide bridge between the eyes, the poor muscle tone, the weakness of the stomach muscles when the infant cried that showed abnormality.

“This is something we’ll have to watch carefully, to see how the baby develops in the next twentyfour hours, or three to four days,” said Dr. F. “But for the moment, the outlook is for an individual without a long life-span and not great mental development in the years ahead. Please call me by tomorrow.”

My wife was still under anesthesia. I went out to buy flowers, and was in her room when she awakened. “How is the baby?” were her first words. I said he was fine. She smiled and went back to sleep.

I visited the nursery that afternoon and again that night. My baby was in a warmer. The nurse on duty assured me it was not an incubator, just a temperature-control device. I had been worried because Philip was premature, born four weeks ahead of schedule. But the nurse told me his weight was good. He looked beautiful. His face seemed round and healthy-looking. I detected none of the unusual facial configurations Dr. F. had mentioned. I began to grope for reassurance. I stopped another nurse to ask how my son appeared to her. “Fine,” she said. “Don’t let the warmer worry you.”

At three the next day, I sat in Dr. F.’s office, on a residential side street a mile from the hospital. He closed the door, and began, quietly, to recite some of his observations. The ears were set back too far on the head. The hands and feet were stubbier than normal. There was an in-turning of the final joint of the pinky fingers. There was a fold over each eyelid. There was a scruff of fat at the back of the neck. The hands and feet flexed back too far under pressure, but did not reflex. “The child is almost double-jointed.” And the tongue was too large for the mouth.

The features and symptoms suggested hypertelorism, a word I immediately recognized as associated with mental retardation. The word for the infant’s overall appearance and condition, said Dr. F., was mongolism. “All signs point to it.” But still Dr. F. did not want to make his diagnosis final. He assured me tests could be taken, hip X rays and chromosome counts. And he could consult with the chief of pediatrics at the hospital. “How sure are you?” I asked. “Is there perhaps a fifty-fifty chance you are wrong?”

No, said Dr. F., the odds were more likely ninety to ten that he was right. Few such children, he continued, live beyond the teens. Those that do survive into adulthood are incapable of reproduction. The outlook for “normal” mental development was about nil, he said, and only fifty-fifty that the child would be able to care for his own bodily functions, and not much more.

“Parents make either one of two decisions,” said Dr. F. “Either they take the child home, and give him as much care as possible. Or, where there is another child at home, as in your case, the decision is sometimes made to institutionalize the mongolian child. Some parents take the child home for several months, or years, and then place it in a nursing home or training school.”

That night I met Dr. L., the chief pediatrician at Booth. He emerged from the nursery, where he had just concluded his examination, and was still wearing his surgical mask and gown. “Wait till I shed this,” he said. “I’ll meet you in the father’s waiting room.”

There was no doubt at all about the diagnosis, said Dr. L. No tests were necessary. All the classic symptoms were present. The child, he said, would be vulnerable to heart trouble “of a severe sort,” perhaps at age one or two. He would be peculiarly susceptible to digestive ailments and respiratory troubles. Life would, according to medical experience, be short. Mental development would be arrested at the age level of two or three.

Dr. L. said many parents institutionalize mongolian children, “particularly when there is another child at home, a normal child.” But he declined firmly to offer any advice.

Two days after Philip was born, I gave Peggy the entire story. Until then she had only known there were symptoms that troubled the doctors. She tried to nurse, but the baby was too weak. Dr. F. ordered Philip be given a bottle in the nursery. I told my wife that I felt it best to have the baby cared for away from home, that this was a decision the doctors had not attempted to influence in any way, but one in which they concurred as the best. Dr. F. said, “He will grow up among children like himself, not aware that he is different.”

In point of fact, the physicians I consulted said it was better to experience heartache now than to know a cumulative, greater anguish later on. To take the child home, one doctor said, would trap the family in “an irreversible situation.” Peggy agreed, and said weakly: “ Take me home.”

Through friends, I learned in the next few days of a private sanitarium in Westchester County, said to be rated one of the best in the state. I called and found my son could be accepted immediately. The institution, I was told, was run “as a hobby” by a pediatrician with a flourishing practice with normal children.

He was a specialist in mentally retarded children. The price, to families receiving welfare assistance, was $160 a month. I was one of these. My income, in the middle range, had forced me to apply to the Nassau County Department of Public Welfare for aid in meeting the costs of institutional care.

Now, among close friends, I began to tell our story. I learned that there are such tragedies in many families. The sister of a neighbor, I learned, cares at home for a mongolian boy of fifteen. He is virtually helpless, still wears diapers. The mother has suffered three miscarriages because of the strain of lifting him.

A friend from my high school days told me of a cousin with mongolism, a woman of thirty-eight with the mind of a four-year-old. “I see her once in a while at a family social function,” he said. “It’s impossible to exchange more than a few words with her. Her mother’s greatest fear is that she will be left alone, with no one to look after her, after the mother dies.” The parents, I was told, were determined to have no more children for fear mongolism might strike again.

Another friend told of another mongolian child being raised at home. The mother has said openly: “I want to outlive him by just one day, so that I can know a single day of freedom.” The child is in his teens. He often wanders away and gets lost in the neighborhood. The police bring him home.

On the weekend following Philip’s birth, I visited the sanitarium which had been recommended to me. It was a large old mansion, constructed of brown and buff-colored stones. The premises looked solid, formidable, and cold; the design was turn-of-the-century; there was a small sign over the front entrance. The neighborhood was neat and partly residential.

Mrs. C., the chief nurse, gave me the admissions forms. I paused, conscious of her watchful eyes, as I answered each question — father’s name, mother’s name, age of infant, weight, and so on. My feelings of guilt were overpowering. I felt I was abandoning my child. My mind returned to the hospital nursery. The other infants now there would come into homes made ready to receive them. My child was forsaken.

“Would you like to look around?” asked Mrs. C. We went first to a room containing the newborn. Nine infants were in cribs, some asleep. Most were awake. There was no whimper, no cry. The babies were almost motionless. They lay as if in a trance. Their faces showed no expressions. Most showed the telltale facial characteristics of mongolism — eyes widely spaced, slight deformities of the cars, round, fat cheeks.

We passed down a corridor. Mrs. C. told me to wait while she closed a door. “The children in there have oversized heads,”she said. “It might disturb you. We keep them together.” On we went, into other rooms containing other children — mongoloids, brain-damaged; some were blind in addition to being mentally retarded. Some of the children seemed too large to be languishing helplessly in a crib; others seemed pitifully small.

In one room was a girl of four, wearing a red playsuit. She lay on her back in the crib, staring blankly into space or at the ceiling. She was the age of my older son, Stephen, but half his size. “Mongolian,” said Mrs. C. She affectionately tickled the child’s stomach to bring on a playlul mood. But there was no response, no laughter, no smile. The face was void. For my child, I told myself, there would be a crib here. It was a thought beyond total understanding or complete acceptance.

In her office, Mrs. C. listened as I told her of my feelings. It was not for this, I said, that we wanted another baby. We would consider ourselves blessed, I went on, if there had been a miscarriage or a blue baby rather than this. Mrs. C. understood. I asked her how mongoloid children fared. While they live, she said, “they haven’t a care in the world — it’s the parents who suffer.” Heart failure kills many the first year, she said, but with new drugs more and more survive that period. If they do, she said, some mongoloid children live for years.

On the trip home, I prayed for my child’s death, cursing and damning myself as I did.

I WENT back to see Dr. F., our pediatrician, who was pleased with the sanitarium and the speed with which arrangements were completed. I raised with him the question of euthanasia in those instances where neurological damage is so severe that no matter how long a child may live, he will be little more than a body — unable to care for the most elemental needs, totally dependent on others for survival.

There was no shock on his face. Mongolism, said Dr. F., was incurable and the cause, usually, of gross retardation. If euthanasia were legal and professionally ethical, he said he would be more inclined to perform it on my child than on children afflicted with other diseases that were on the threshold of new discoveries. But for mongolism, he said, there was no cure and none on the horizon. Research was concentrating, he said, on birth defects so as to eliminate the prenatal causes of mongolism.

While medicine could not take Philip’s life, said Dr. F., nothing would be done to prolong it. No operations would be performed; no miracle drugs would be administered. “Medical emergencies will be met, such as sudden bleeding or choking,” said Dr. F., “and the child will be kept warm, led, and sheltered. Nothing more.”

I returned to the sanitarium in a day or two to meet Dr. K., the director. His offices were separated from the institution he ran by a narrow driveway. On one side of the driveway was the sanitarium, with its population of retarded children. On the other was a pediatrician’s office, with baby carriages parked at the door. Cutouts of clowns and Humpty-Dumpties adorned the bright yellow walls of Dr. K.’s waiting room. There was laughter, and an occasional shriek, and mothers chased after children intent on mild havoc. At a small table, a group of children read aloud from a picture book.

Dr. K. is a man in his fifties. He has been a specialist in mental retardation among children for thirty years. He has examined every mongoloid child in Westchester County, it is said, either to confirm the diagnosis of other physicians or to contradict them. He spoke of mongolism in scientific terms, the papers he had written on it, the statistics compiled. Nothing, he said, had been discovered concerning precisely what goes wrong during pregnancy to cause the condition, marked by the presence of 47 chromosomes, one more than the normal human complement of 46. The research, he said, was attempting to find what body processes within the mother produce the extra chromosome.

I told Dr. K. that I wanted nothing done to extend my son’s hold on life artificially. He assured me he understood. The sanitarium, he said, contains no oxygen. The children are given no inoculations against childhood diseases, unless parents insist. “There are churches on all sides of me,” he said. “Every one of these ministers agrees with me that it would not be moral, or serving God’s will, to prolong these lives.”

At the suggestion of an official in the welfare department, a social caseworker took Philip to the sanitarium next day. I had brought her diapers, nightgowns, blankets, bunting, and bottles for his formula. A few hours after Philip’s arrival, Dr. K. called to tell me he had died. “Heart failure and jaundice,” he said. “Consider it a blessing.” And I remembered what he had told me our first meeting: “Some parents regularly visit their children here. They waste their lives trying to expunge a feeling of guilt that should not be there, instead of devoting themselves to their normal children. It is for them that they must and should live.”

I did not know my son. I do not know his thousands of brothers and sisters, of whom it has been written, “Oh, what a mortal pity He was ever born,” and I do not know the parents of these children. I do not speak for them, just for myself and perhaps for Philip. I believe that it is time for a sane and civilized and humane approach to euthanasia.

I do not know how it should be practiced, or what committee should have a voice in the decisions, or what pill or injection might best be employed. I do know that there are thousands of children on this earth who should never have been born. Their lives are a blank. They do not play; they do not read; they do not grow; they do not live or love. Their life is without meaning to themselves, and an agony to their families.

Why?

— Bernard Bard