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End of Life Conversations, Developmental Disabilities,
and Other Ethical Issues

Oklahoma Infanticide

A Three Part CNN Special Assignment (1984)
Carlton Sherwood, CNN Reporter

Part One:

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Carlton Sherwood: This is Carlton Johnson. He was born with a serious but treatable birth defect. But his mother says that a team of doctors recommended against treatment, and just four days after he was born, Carlton Johnson was transferred to an institution, without the benefit of surgery to let nature take its course.

George McCormick: They expect him to die in a very short period of time.

Carlton Sherwood: Carlton is not an isolated case. In hospitals around the country, doctors and parents are deciding against life-saving treatment, even routine medical care for certain infants with physical or suspected mental handicaps. Consequently, each year hundreds, if not thousands of newborns who might otherwise live with disabilities are allowed to die.

Carlton Sherwood: The practice is widespread, but the public rarely hears about it, mainly because of doctor-patient confidentiality laws and fear of litigation. But when the courts do become involved, what was once secret and private becomes front-page news.

Unknown: You bring people to a hospital when they're sick to get well. You don't bring them there to be starved to death. It died here.

Carlton Sherwood: At a hospital in Bloomington, Indiana, a child born with Down syndrome, a cause of mental retardation, is deliberately denied medical treatment, even food and water. The doctors and parents are taken to court but too late. Baby Doe dies after six days. That was in 1982.

Unknown: They had no business interfering with the medical decisions of parents, concerned parents, loving parents.

Unknown: Nobody has the right to deny that life.

Carlton Sherwood: Just four months ago in Stony Brook, New York, a baby girl was born with spina bifida, an exposed spine, which if left untreated usually results in infection and death. Because of the possibility of other handicaps, all treatment was suspended. A court battle over the fate of Baby Jane Doe erupts and continues today.

Nurse: Say bye-bye. Say bye-bye, bye bye.

Carlton Sherwood: Like Baby Jane Doe, Carlton Johnson was born with spina bifida, a birth defect which nearly always produces paralysis in the lower parts of the body and, in a small percentage of cases, some mental retardation. Standard treatment for spina bifida includes closure of the spine, large doses of antibiotics to ward off deadly infection, and if necessary, the implantation of a shunt or thin tube under the skin to prevent a buildup of fluids around the brain.

Carlton Sherwood: Experts in the field say with that kind of treatment, victims of spina bifida usually have a better than 80% chance of survival.

Dr. David Macleod: These children are born not dying. These children are likely to have a significant handicap, a handicap however, which is compatible with independent competitive existence.

Carlton Sherwood: But in Carlton Johnson's case, his mother says a team of doctors from Oklahoma Children's Hospital recommended that his birth defect not be treated, either surgically or with medication. There was no need for these treatments his mother was told, because Carlton had no chance of surviving beyond a year.

Carlton Sherwood: What did they tell you his chances were?

Mrs. Sharon Johnson: Well, not very good. They said, like six months to a year. The only thing they told me was about a shunt. And then, you know, after they told me about six months, that he would live six months without it and I just figured what's the sense? He already suffers, so why should he suffer any more?

Carlton Sherwood: That was just hours after Carlton's birth. Four days later, he was transferred to the Oklahoma Children's Shelter, a federally subsidized intermediate care facility for handicapped children. At the time CNN cameras arrived, Carlton had lived there for 17 months. Medical records obtained by CNN show he received antibiotics for an ear infection and was hospitalized for dehydration and examinations. His head, near normal size at birth, became swollen with fluids, a condition known as hydrocephalus, which can cause irreparable brain damage.

Carlton Sherwood: This is the back of a child whose spine was surgically closed. Carlton Johnson's untreated back hosted a membrane-thin sac containing about a quart of spinal fluid that was about the size of walnut when he was born.

George McCormick: The meningomyelocele is leaking, which we are afraid that it might rupture.

Carlton Sherwood: If it does rupture, what happens?

George McCormick: Infection and eventually death if they're not able to successfully treat it. Then, at that stage, it would be crisis management and not just supportive care.

Carlton Sherwood: George McCormick, Director of Nursing at the shelter, says he spent months trying to persuade physicians to operate on Carlton.

George McCormick: Sometimes I was just ignored. They moved on to other subjects. So.

Carlton Sherwood: They weren't very anxious, you're telling me, then to do anything at all.

George McCormick: No they weren't, they weren't anxious. They haven't been anxious to, uh, do or act on the behalf of any of these children. You prodded them and, essentially, you didn't let them forget.

Carlton Sherwood: McCormick secured Mrs. Johnson's consent for an operation last October. That same month, medical records show, doctors agreed to perform the surgery. But when CNN went to the shelter four months later, Carlton still had not received an operation. Can surgery be performed safely after such a delay?

Dr. David Shurtleff: Is it possible to operate on him? The answer is yes. Is it an extremely risky operation now with an extremely high morbidity and mortality? And the answer is yes.

Carlton Sherwood: Dr. Shurtleff is the Chief of Pediatrics at Seattle's Children's Hospital and a national expert in the field of spina bifida. CNN asked him to view a videotape and study the medical records that we had obtained.

Carlton Sherwood: Is that good medicine and would you have done that? Again, based on...

Dr. David Shurtleff: My answer is no. We would have followed the child. We'd have provided it with acute illness care. We would have immunized the child, and we would have provided him with relief of pain. And by serial assessments, I'm sure that we would have ended up operating on that child to close the back and to put a spinal fluid shunt in.

Carlton Sherwood: Dr. David Macleod, Chief of Pediatrics at Chicago Children's Hospital, is also highly critical of non-treatment programs.

Dr. David Macleod: To watch the child develop a cosmetically unacceptable head and endanger the developing brain because of increased intracranial pressure is bad medicine. I just don't think that that's what is acceptable.

Carlton Sherwood: Repeated requests for interviews with the team of doctors were denied. And CNN cameras were even barred from Oklahoma Children's Hospital. Later, after additional telegram requests, the hospital relented somewhat and allowed us to talk to their Chief of Pediatrics Dr. J. Andy Sullivan. With the hospital's own cameras taping our interview, Dr. Sullivan denied any physicians there withhold live-saving treatment.

Dr. J. Andy Sullivan: We don't have any non-treatment regimen. We have some patients that receive nurturing or less aggressive surgical management, but...

Carlton Sherwood: And despite an official hospital release form where the attending physician recommended children be transferred to the shelter, Dr. Sullivan denied any such practice exist or that he himself has treated any patients at the shelter.

Carlton Sherwood: And despite an official hospital release form where the attending physician recommended children be transferred to the shelter, Dr. Sullivan denied any such practice exist or that he himself has treated any patients at the shelter.

Carlton Sherwood: You're trying to tell me, doctor, that the team at this hospital does not recommend sending these children to the shelter when the decision has been made not to treat?

Dr. J. Andy Sullivan: There's not a recommendation to send these children anywhere. They're discharged to the care of their parents.

Carlton Sherwood: But have you dealt with any children who have been referred, uh, or released to the children's shelter?

Dr. J. Andy Sullivan: I don't recall being involved with any children that were discharged and their families elected to place them in the shelter.

Carlton Sherwood: But according to medical records obtained by CNN, it was Dr. Sullivan who conducted an evaluation of Carlton Johnson at the shelter last September. What were his conclusions then?

Carlton Sherwood: "No further treatment or evaluation recommendations are made at this time. This child is not a candidate for an active rehabilitation program."

Dr. J. Andy Sullivan: What you have just done is read something to me that you would allude to me. I would assume if you do that, that you are violating by exposing his medical record some relationship that I have with that patient. And, uh, I do not have his record. I was not advised before this that you wished to discuss this patient, and I don't feel it would be appropriate to discuss a specific patient in front of the nation.

Carlton Sherwood: This is... this is a statement signed by his mother releasing all of the information and allowing anyone to talk to us about him, and if you'd like to look at that.

Dr. J. Andy Sullivan: I'd prefer not to look at it. I don't discuss my patients' problems over the air.

Carlton Sherwood: Counselor, you may want to look at this. This is a statement by the child's mother we're talking about. She's given the State and the hospital and any physician permission. I'll tell you what the statement says. To discuss...

Dr. J. Andy Sullivan: I'm really not interested in it. I have no idea if that is that lady's signature. For all I know, you could have written that.

Carlton Sherwood: Sharon Johnson did authorize CNN to look into Carlton's medical history. And she insists that it was the doctors at Children's Hospital who persuaded her that Carlton should be placed in a shelter because he was going to die.

Sharon Johnson: Everything is negative, no positive, no hopes, nothing.

Carlton Sherwood: Like what? Go ahead. Start straight through...

Sharon Johnson: You know, just like you could say something like, "You can do this for him, you can do that for him." But it wasn' wasn't like that. It was just all negative, just point blank negative.

Carlton Sherwood: No matter what you do, what's going to happen?

Sharon Johnson: He was going to die. That was... that was the bottom line.

Carlton Sherwood: You know Carlton's mother. Did she really, truly give him up of her own... Was that her own decision? Or was that the decision of others?

George McCormick: Mrs. Johnson was so misinformed or she was just never given the facts on Carlton. She thought he was some sort of a monster. She thought he was blind, which he's... he's not blind. That fact's demonstrated by him recognizing... recognizing staff members.

Carlton Sherwood: Two weeks after CNN discussed Carlton Johnson's condition with Oklahoma officials, he was transferred to Children's Hospital where he received an operation. But he won't be returning to the shelter. It was closed recently by state officials who charged the shelter owners in a civil suit with racketeering and fraud.

Carlton Sherwood: McCormick says Carlton is not an isolated case. If anything, he says, Carlton is different only because he has somehow managed to beats the odds and has, so far, clung to life.

Carlton Sherwood: Is it normal for children to be sent over here from Children's Hospital without a shunt?

George McCormick: Some of the children do, some of the children don't.

Carlton Sherwood: What happens if they're not sent with... What happens if they're not shunted, as a rule?

George McCormick: They die...

Carlton Sherwood: How long?

George McCormick: here. Ah [Sighs], depending on how strong the child is and... Anywhere from days to months and some, in a couple cases, years.

Carlton Sherwood: Carlton is one of the lucky ones, then, I take it?

George McCormick: One of the lucky ones, in that he's a survivor.

Carlton Sherwood: At least 24 other newborns with spina bifida didn't survive. They died at the shelter after a team of physicians from Oklahoma Children's Hospital recommended all medical treatment be withheld. In our next report, we'll examine how those infants were selected for non-treatment, a process which considers not only the child's medical potential but also the parents social and economic ability to care for a handicapped child.

Carlton Sherwood: I'm Carlton Sherwood, CNN, on special assignment.

CNN Special Assignment: "Oklahoma Infanticide": Part Two  Part Three

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