Is it ethical to take a living baby – albeit on artificial life support – and remove its heart to save the life of another baby? Is it ethical to keep a baby alive for the sole purpose that its organs can be used for transplants? Will the thousands of Canadian adults, who are kept alive by artificial support, be seen in the future as a source for the hearts, livers, kidneys needed for transplants? These, and many other questions have been raised by the story of Baby Gabrielle and Baby Paul.
Both babies had been diagnosed during pregnancy as having major physical abnormalities: Gabrielle was anencephalic, lacking the greater part of her brain; Paul had a potentially-fatal heart malformation. According to the doctors quoted by the press, Gabrielle’s mother decided not to abort the baby (and this statement also raised questions) but rather carry her child to term and allow her to be used as an organ donor to help other children live. On October 16, 1987, in Loma Linda, California, the heart of little Gabrielle was transplanted into Paul who only three hours had been delivered by a caesarian section.
Anencephaly
Baby Gabrielle was diagnosed as anencephalic some time before she was born. Anencephaly results from a neural tube defect in the very early stages of the development of the embryo. Dr. Jerome LeJeune describes it thus:
“At the beginning of life – around ten days – the first line appears on the embryo showing where the neural tube will grow. Once the tube begins to grow the closing continues in both directions, exactly like a zip system going both up and down. If it does not close at one end, you get spina bifida or meningomyeloccle; if it does not close at the other end, you get an aplasia (failure of an organ or other part of the body to develop naturally) of the cerebellum and eventually anencephaly, that is, an absence of the brain. Anencephalic children cannot survive because they do not have the ability to regulate themselves since their system has not been built.”
An anencephalic baby cannot survive; it will die, possibly before birth, certainly very shortly afterwards. Because organs for newborns and infants are in short supply for transplants, a number of doctors have looked at anencephalic babies as an untapped source for hearts, livers, etc. The problem, however, is that without artificial life support the organs of these babies tend to atrophy as the babies slowly die.
According to a report in the Globe and Mail, October 19, 1987, transplant centres in the United States “routinely reject anencephalic donors because they are not considered dead under state laws and medical society standards. By the time they are dead, their organs are useless for transplanting.”
In January 1987 a medical conference discussed the use of life support for anencephalics to keep their organs healthy until they could be used. Anencephalics thus would provide a good source for transplants. In October, with the consent of her parents, Baby Gabrielle was kept alive so that her organs could be utilized. The Globe and Mail mentions a Dr. Harrison, who is apparently a well-known spokesman for those members of the medical profession who sponsor the idea of using anencephalic babies as organ donors without waiting for them to be brain dead. Dr. Harrison is quoted as saying that the Canadian doctors “had performed an elaborate little shell game” to get around “the ethical stumbling block that prevents wider use of organs from this source.”
In essence, the utilitarian argument of such doctors is that the babies are as good as dead, so why not say they are dead, ad if they are dead, why not cut them up and use whatever is usable? Such thinking reduces a tiny human being – however damaged, however limited in potential – to the same level as a broken-down car on the scrap heap which is being cannibalized for spare parts for other cars.
Quite different, however, was the thinking of Gabrielle’s parents. Faced with the knowledge that their baby had no chance of survival they “wanted to see that their baby would touch others and contribute to life in some way.” Any parent has lost a baby will sympathize with their desire. It was their decision to keep the baby alive by artificial means so that its organs would remain healthy. Their baby’s heart made it possible for Baby Paul to have the chance to live and there can be no doubt that this fact will be a source of consolation to them.
The question, however, remains: is it ethical to keep a baby alive for the sole purpose of using its organs for transplant when needed? It is a question that cannot be ignored because it is very clear that there will be many other anencephalic babies in the future who will be seen, and used, as organ donors.
It is also obvious that if brain-absent babies are reduced to the condition of organ-donors then, as night follows day, adults being kept alive by artificial means will follow suit as organ-donors-when-needed. This spectre is already being discussed.
Future organ donors
There is another interesting but disturbing element in the press discussion of the two babies. According to the reports, Gabrielle’s mother chose to carry the baby to term, rather than abort it. Dr. Frewen, a pediatrician is quoted as saying that her decision may lead others who are receiving genetic counseling to complete a pregnancy and donate organs rather than abort the baby.
The Criminal Code, however, says nothing about legalizing the abortion of handicapped babies, and it does not permit abortions for eugenic reasons. It is worth recalling the words of John Turner, then the Minister of justice, as he spoke of his bill to legalize some abortions, May 6, 1969.
“This bill has rejected the eugenic, sociological or criminal offence reasons. The bill limits the possibility of therapeutic abortions to these circumstances: It is to be performed by a medical practitioner who is supported by a therapeutic abortion committee of medical practitioners in a certified or approved hospital, and the abortion is to be performed only where the health or life of the mother is in danger.”
In the last eighteen years since the Bill was passed every single provision stated by Turner has been broken, at the cost of the lives of one million Canadian babies.
Gene mapping
The statement which links the genetic counseling with the options of either an abortion or completing a pregnancy in order to donate the baby’s organs raises new specters. “Gene mapping,” or the identification of particular genes related to specific handicaps is going on in research laboratories throughout the world. It is now possible to identify the genes associated with cystic fibrosis, muscular dystrophy, sickle cell anemia, and many other disorders. Which genetically caused condition would be doctor recommended as one where the baby should be allowed to be born alive, and then utilized as an organ donor?
A mother’s third option, not mentioned in the press, is to welcome the handicapped baby with love and special care. A recent article in Horizons, the paper of the Easter Seal Society, was written by the single mother of a severely cerebral palsied child. She mentioned the special difficulties in learning to deal with a handicapped baby and how she was able to cope.
At the end she said: “So often people have said to me ‘God only gives special children to special people.’ Let me adamantly say that this is not true. We, as parents and professionals who work with handicapped children, became special people because we have special children in our lives. There is not a day that goes by, however difficult or smooth the circumstances have been, that I have not learned from my loving child something about myself or about living.
