Carlton Johnson, a black baby boy, was born on September 12, 1982. he was found to have myelomenin-gocele (spina bifida) and hydrocephalus, and shortly after birth he was transferred to Oklahoma’s Children’s Memorial Hospital. There he became first a statistic and later a key player in what has become known in medical/legal history as the Oklahoma Experiment.
The public first learned of this experiment through an article “Early Management and Decision Making for Treatment of Myelomenin-gocele,” in Pediatrics, October 1983, by R.H. Gross, M.D, and four co-workers. The article described the criteria by which the team at Oklahoma Children’s Memorial Hospital had judged the babies with spina bifida and selected some for “vigorous care” – which meant aggressive surgical and medical care – and the rest for “supportive” treatment, usually in a separate Children’s Shelter.
“Supportive” is merely a euphemism for ‘no active’ treatment, leading to death. According to Dr. Gross, “antibiotics are not given and sedation is not prescribed for these infants.”
The article openly declared that the criteria used by the hospital team were not just medical and objective; many were socio-economic and clearly subjective. The recommendations for treatment of two babies with identical physical handicaps, but different social backgrounds, could be poles apart: one could be selected for surgery and all that modern medicine could provide; the other – from a less wealthy, less educated family – was destined for no treatment until death intervened or (as in the case of Carlton Johnson) the baby hung on to life for so long that eventually the doctors were forced to give some treatment. The decision-making process was unashamedly discriminatory on the basis of money, education, family stability, accessible medical care, etc., etc. Gross himself stated: “Thus, the “selection criteria’ could be quite different, depending on the contribution from home and society.”
Once the team had decided on treatment or no treatment, a physician and a couple of other aides met with the family to give their recommendation. In a television interview, in February 1984, Dr. Richard Gross said that the parents were not told about the social and economic criteria used, they were told only that this recommendation represented the medical judgement of the team. The family could still request active treatment for their baby, and five of the babies in the experiment originally recommended for supportive treatment only, did receive this care. Three of these infants are alive and well; two babies died at nine and 72 days.
The medical records on baby Carlton show that information about a shunt to deal with the hydrocephalus was given to his mother, so she could make a decision. However, Sharon Johnson, in a television documentary Who Lives, Who Dies (February 21, 1984), said: “The only thing they told me was about a shunt, and this you know after they told me about six months, that he would live six months without it, and then with it, a year, and I just figured, what’s the sense in it – he already suffers, so why should he suffer any more?”
The Oklahoma Experiment to decide the fates of spina bifida babies lasted five years from July 1, 1977 to June 30, 1982 and involved 69 babies.
Thirty-six children (52 per cent) were selected for “vigorous” treatment and, except for one who was killed in a car accident, all are alive and well. At the parents’ insistence, five other infants were included in the active care group and three of these are alive and well.
Of the remaining 28 babies initially recommended for inactive care, 24 died within 189 days of birth, three later received some care, and one who had been taken home by his family did not return to the hospital for “follow-up care.”
The article in Pediatrics shows that Dr. Gross and his co-workers are obviously impressed by their ability to pick the winners. After all, those they chose for treatment did survive! They offered their experiment as a guide:
“Although one can never feel comfortable with such dilemmas, this approach seems to us the best alternative available at this time.”
Happily there are other doctors with a different philosophy. Dr. Freeman at the Birth Defects Treatment Centre at johns Hopkins wrote of the Oklahoma Experiment:
“If they recommend no treatment, and the baby dies, we will never know whether tat baby would have done well with its paralysis. We will never know whether the parents would have coped, or whether they would have been put under ‘undue stress,’ if that is pertinent. It is our experience that most families cope, that sources of support – financial and emotional – can usually be found, and that most children – even those with high lesions – are functioning in school.”
Another expert in treating children with spina bifida is David G. McLone, M.D., Ph.D., Chairman of Pediatric Neurosurgery, Children’s Memorial Hospital in Chicago.
Some years ago he and his colleagues decided to operate on every spina bifida case that came to them, within 24 hours if possible, and they were highly successful. Dr. McLone has written:
“Primarily through medical progress, 90 per cent of the children will survive, 80 per cent will have normal intelligence, 90 per cent will be socially continent of bladder and bowel, 80 per cent of the survivors with normal intelligence will be able to ambulate in the community (walk with or without braces) and it is likely that 75 per cent of the children will be independent and competitive as adults.”
Yet the Oklahoma team were ready to write off 48 per cent of their tiny patients, including Carlton Johnson.
The article on the Oklahoma Experiment followed closely on the heels of the controversy over the death by starvation of Baby Doe. Efforts by the Sugeon General, Dr. Everett Koop to ensure that all handicapped babies receive adequate medical care were being strongly opposed by the American Academy of Pediatrics.
The Academy argued against federal regulations on the grounds that (a) regulation was not needed, and (b) the problem was too insignificant to warrant establishing formal procedures. However, the Oklahoma report removed any doubt that a systematic threat was being directed against handicapped babies, and that, therefore, there was a need for federal regulation.
The tug of war between pro-life and children’s civil rights groups on the one hand, and the “quality of life” experts on the other, finished in a pro-child victory.
On October 9, 1984, President Reagan signed into laws the Child abuse and Treatment Act. Under this act, “medical neglect” includes failing to provide treatment (including nutrition, hydration and medication) and any other medically indicated treatment.
The Child Abuse Amendments resolved three key issues which had arisen in the Infant Doe case: food and water should always be provided regardless of the child’s disabilities; “quality of life” considerations may not be used in deciding the type of medical treatment; child-protective agencies are required to act if and when a child is being denied beneficial medical treatment.
During the height of the debate on the need for laws to protect handicapped infants, Joseph cardinal Bernardin summed up the feelings of those who respect life. In May 1984 he said “…I would say something still more serious. The very emergence of this matter as a controverted issue in our country suggests that there is something wrong with society’s scale of values.
“If there is truth to the assertion that a society’s moral sensitivity can be gauged by the protection it extends t o the lives of its most vulnerable members, what are we to say of a society – ours – in which the killing of handicapped infants by neglect is practised and defended.”
Meanwhile an investigation of events in Oklahoma was continuing, and Cable News Network gave a good deal of publicity to the affair by interviewing parents and hospital personnel. After much legal research a group of concerned citizens, and organizations representing people with disabilities, filed a formal complaint, The February 24, 1984 Complaint, with the U.S. Departments of Health and Human Serives (H.H.S) and Justice, alleging that the rights of handicapped children, as guaranteed by federal statutes, had been violated.
Over a year later, on October 3, 1985, a class suit on behalf of infants with disabilities and their parents was filed by disability – rights groups. One of the plaintiffs was Carlton Johnson, age three.
Baby Carlton Johnson was born on September 12, 1982, and, because he had spina bifida and hydrocephalus was transferred to Oklahoma Children’s Memorial Hospital. The physician recommended he should not be treated, and his mother, who says she was given little information but trusted the doctors, agreed. Carlton was then transferred to the Children’s Shelter.
Shortly afterwards, on Ocotber 17, 1982, Carlton was returned to the hospital… he was suffering from severe respiratory distress, periods of cessation of breathing, ear infection and dehydration. The physician’s orders stated that there were to be:
– no laboratory tests to monitor his condition.
– no antibiotics for his ear infection
– no drugs
– no intravenous fluids correct dehydration.
He was not to be put on a respirator. He was given (his only medical care) oral gastric tube feedings.
No one could claim that this baby had received tender, loving care from his doctors, but Carlton was obviously a fighter and he improved and went back to the shelter.
In October 1983, when it became obvious that Carlton was not going to die, the hospital team re-evaluated his case. By now, however, his head and the ‘sac’ on his back were greatly enlarged. It was decided to treat the baby surgically, and finally on January 30, 1984 surgery on his back was performed.
A shunt to treat the hydrocephalus was placed a few days later, February 7, but because this was so delayed the baby’s head remained enlarged. Only time will tell how the initial denial of medical care will affect the child.
Last month, September 1987, an Oklahoma federal court held that the doctors and administrators at Oklahoma federal court held that the doctors and administrators at Oklahoma Children’s Memorial Hospital violated the United States Constitution by making treatment decisions based on a child’s degree of mental or physical handicap, and or on the child’s social or economic status.
This is a great victory for the pro-life cause, but it was not won by people who sit back and do nothing. It was won by lawyers who are totally pro-life, and by the organizations that fight for the handicapped, the retarded and those with spina bifida and Down Syndrome. A recent article regarding treatment for handicapped newborns by Dr. Thomas E. Elkins ad the Rev. Doug Brown, Ph.D., sums this up.
“There are reasons for hope. Hope lies in the recognition of the common worth of human life. Hope lies in the courage to address controversial issues. Hope lies in the ability to see that suffering can be instructive, constructive and developmental.”