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Every so often, a proposal is run up the proverbial flagpole that is so outrageous that one is dumbfounded that such an idea could seriously be suggested. A recent proposal out of the UK is one such idea, leaving the reader—to use a term familiar to Brits—"gobsmacked."
Article originally appeared in
The context is the perennial shortage of donor organs, particularly for children. Over 7,000 adults and children are on waiting lists for organs in the UK,1 while in the U.S., over 2,000 children alone are waiting for organs.2 Last year, at least 42 infants were on the waiting list for a heart, an organ in rare supply because the donor must also be a child for the heart to fit. Yet, in the past two years, only eleven infants have become organ donors in the UK.
In early March, at the annual meeting of the British Transplantation Society, some National Health Service (NHS) transplant surgeons suggested a plan to alleviate the shortage: harvest organs from newborns who have no prospect of survival.3 One group in particular drew their interest: children with anencephaly, a disorder that can be identified at about the twelfth week of pregnancy. Anencephalic children are missing a major part of their brain and skull, and are said to have "no chance of survival," although such babies have been reported to live as long as one,4 two, or even three years.5 The surgeons further reasoned that since these babies could never experience consciousness, they would not suffer.
The proposal draws an ethical line by stating that, at least initially, no woman carrying an anencephalic baby would be approached until she had made a decision whether or not to terminate her pregnancy. If she continued, she would be "supported" in unspecified ways for the full nine months. At birth, the baby's body would be supported by a ventilator—contrary to current NHS protocols, which prohibit life-sustaining technology for anencephalic newborns. The baby's organs would be harvested once he was declared dead, but while his heartbeat and breathing were being maintained artificially, and before he met the legal and medical criteria for brain death.
Currently, few people, whether parents or hospital staff, are even aware that infants can be organ donors. The NHS proposal therefore specifies that training be given to NHS staff, including training on how to discuss such a sensitive issue with parents who are dealing with a devastating diagnosis. The few cases to date involving anencephalic infants as donors were initiated by request of the parents, who sought the comfort of knowing that their child's brief life would gain additional meaning from helping others. Yet, as will be seen, implementation of the transplant surgeons' proposal could easily cause "parental request" to morph into "NHS pressure."
Indeed, this proposal is not the first attempt to use anencephalic newborns as organ donors. As long ago as the late 1980s, a heart from an anencephalic infant known as "Baby Gabriel" was transplanted into a newborn boy. This raised serious ethical concerns, not least because anencephalic infants do not meet the legal criteria of brain death at the time their organs need to be removed and thus fail to meet a basic criterion of eligibility for organ donation. If transplant surgeons were to wait until brain death occurred in these babies, their organs will have deteriorated too much and become unusable.
The American Medical Association (AMA) Council on Ethical and Judicial Affairs dealt with this problem by recommending suspension of the "dead donor rule" if the parents consented and various safeguards were put in place. In sharp contrast, the policies of the Canadian Paediatric Society (1990, reaffirmed in 2005) and of the American Academy of Pediatrics (1992) stated that anencephalic infants were not appropriate organ donors, and held firm to the prevailing legal and medical criteria for brain death.6 The AMA changed course, and its current policy now also affirms the "dead donor rule," but it does allow mechanical support to keep the organs viable until death is declared.7
Merely Medical Resources?
From 1975 to 1999, the incidence of children being born with anencephaly dropped by 96 percent, for two primary reasons: (1) abortion, and (2) the use of folic acid supplements by pregnant women to prevent neural tube defects in developing babies.8 With regard to the first, the NHS proposal is counting on a radical change in women's behavior. For although about 4,000 babies with anencephaly are born in the US each year,9 in the UK, only about a dozen are born every year. The rest—at least 230 annually—are aborted. Yet British transplant surgeons anticipate that, under their proposal, at least 100 anencephalic babies annually will become organ donors. This means that all ten or twelve women who will carry their babies to term regardless would need to consent to donation, while another 90 or so women who would otherwise abort must be persuaded to carry their babies to term for transplant purposes.
But how can the latter goal be reached if a woman cannot be approached about donation until after she's decided against abortion? No need to worry: the surgeons are already discussing whether to amend their proposal to allow them to offer the woman the option of organ donation at the time the diagnosis of anencephaly is made. If this is done, and if it motivates a woman to carry her child to term and give birth, would she be doing so because she loves her child, or only for the sake of some other family's child? Wouldn't the latter amount to treating the anencephalic baby merely as a medical resource, an object to serve "the greater good"?
It is no secret that under the current regime in both Britain and America, women who are carrying a child with a disability are often pressured to terminate their pregnancy. I have been told about more than one pregnant woman being taken aside and quizzed by the nurse, "Is your husband forcing you to continue this pregnancy?" Frequently, the only option she is offered is abortion. It is ironic, to say the least, that these brave women's refusals to abort are now being lauded rather than scorned—but only because the utilitarian goal posts have shifted toward "using" their babies' organs. (I wonder, would a mother of a child with a non-lethal disability who survives receive the same support?)
The Doctor's Duty
There's yet one more aspect of this moral conundrum, one that bears directly on both the physician who cares for the baby and the transplant surgeon. The obstetrician is responsible for the life and health of both mother and newborn. The surgeon's goal is to save another child's life. But if the surgeon harvests the newborn's heart while he is on life support, the act of removing the heart, and not the anencephaly, would cause the infant's death.
A physician's first duty is to his patient—even if that patient is a baby born dying—and to do no harm. That would include not declaring the baby dead prematurely and not killing him by removing a vital organ. As Dr. Edmund Pellegrino, a virtuous physician by any standard, reminds us in the context of organ transplantation, "No person should be sacrificed for the good of another." •
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