Infant Donors Hard to Find : Organ Transplant Networks Face Ethics, Supply Problems
Nearly two weeks ago, the parents of Jesse Dean Sepulveda in California and the parents of Robert Dean Cardin in Kentucky were hoping desperately for heart donors for their newborn babies struggling against fatal birth defects.
Then, word of a potential donor reached the United Network for Organ Sharing in Richmond, Va., from officials at the Georgetown University Medical Center.
It turned out to be a false alarm, for although the baby at Georgetown had been born with a condition called anencephaly, and most of the brain was missing, the infant was not “brain dead” within the legal sense of the term, and thus could not be considered a donor.
Within days of that disappointment, heart donors were found for both Baby Jesse at Loma Linda University Medical Center and Baby Robert at Kosair Children’s Hospital in Louisville. Both infants, who had suffered from hypoplastic left heart syndrome, received transplants last week.
But the incident illustrates one of the peculiar difficulties associated with the donation of hearts and other organs for transplants in very young children. Officials at the various agencies throughout the nation that coordinate organ transfers are likely to face these problems more often as other physicians begin to follow the pioneering work of Loma Linda’s Dr. Leonard Bailey, who has performed five infant heart transplants since November.
Bailey told reporters after Jesse’s operation that 16 of the 21 infants he has considered for heart transplants since November have died before surgery, at least some because no donors could be found. Bailey has cited the shortage of potential infant hearts for transplant as one reason for his controversial decision in 1984 to transplant the heart of a baboon into Baby Fae, who died after 21 days.
The issue was further underlined when the donor heart for Baby Jesse was found after nationwide publicity about his case, rather than through the usual organ procurement agencies.
Physicians and officials of organ procurement centers interviewed in recent days say they believe that growing awareness of the need for infant organs for transplants eventually will ease the shortage. They say the benefits of this increased awareness are likely to outweigh any destructive side-effects of bypassing the system in the Baby Jesse case.
But novel problems remain in finding donors for very young patients.
2-Hour-Old Potential Donor
“This is a newly identified need,” said Barbara L. Schulman, coordinator of the Regional Organ Procurement Agency at UCLA, which coordinates organ donations throughout Southern California. “We heard about a 2-hour-old child on Friday. This never would have happened before.” (The child had to be rejected as a donor for medical reasons).
“With a good system for asking families, you will get the organs,” said Jeffrey Prottas of Brandeis University’s Health Policy Center, a member of the federal Task Force on Organ Transplantation. “There will always be more need than supply, but there is probably more supply than we tap.”
He noted, however, that the issue is so new that he is aware of no medical research to estimate how many infant donors might be available each year.
Even as such information becomes available, however, Prottas and others predict only a modest increase in the supply of organs for the very young.
Only people who are pronounced brain dead in the hospital, while their hearts and other vital organs remain undamaged, are able to be considered as organ donors. Usually, this means donors were previously healthy and died quickly.
For example, many adult organ donors have died of trauma, such as automobile accidents. Significantly fewer children die in automobile accidents, and the proliferation of mandatory child seat-belt laws in many states is expected to further decrease such deaths.
Sudden Infant Death Syndrome
The most common cause of death in children between two weeks and one year of age is called the sudden infant death syndrome, a mysterious illness in which seemingly normal and healthy infants stop breathing suddenly in their sleep. The syndrome occurs in about two out of 1,000 babies.
Since January, five such children from Southern California, who were unsuccessfully resuscitated at hospitals, have been used as heart or liver donors, according to Schulman.
Three other donors included two child-abuse victims and one infant who died after a rare reaction to medication.
In child-abuse cases, the consent of both the coroner and the parents is required before any organs may be used for transplant. Sometimes the parents are suspected in the deaths, complicating the consent issue.
“These donations are often ethically and morally difficult,” Schulman said. But even when a parent may be charged in the case, “they are legally permissible,” she added.
Because newborns grow quickly, donors and recipients must match closely by age and size, for heart and liver transplants. Additionally, as with adult transplants, physicians search for compatible blood and tissue types.
Medical Ethics
The scarce organ supply also has focused the attention of physicians and experts in medical ethics on the difficulties in defining brain death in young children, specifically the issues raised by those born with a condition, called anencephaly, in which their brains fail to develop.
Several babies are born in California each week with this condition, which is always fatal before or very soon after birth. Increasingly, obstetricians are contacting organ procurement agencies about such children, only to be told that because parts of their brains are working, they are not brain dead under any state law, according to UCLA’s Schulman.
“We may need to create a separate category for children who are born ‘brain absent,’ not ‘brain dead,’ before we can clarify the legal status of anencephalics as organ donors,” said Arthur Caplan, a bioethicist at the Hastings Center, a medical ethics research center in New York.
This issue is likely to be addressed at a number of medical meetings, including a June 30 conference at the National Institutes of Health in Bethesda, Md., and a national conference on pediatric brain death and organ donation being organized for next winter by Dr. Howard Kaufman, a neurosurgeon at West Virginia University.
