When doctors at Loma Linda University Medical Center implanted a new heart in the chest of newborn Baby Paul Holc last month, the operation was considered historic.
Only hours after his birth by Caesarean section, Baby Paul became the youngest-ever heart transplant recipient--and is now listed in good condition. In the medical community, however, his age has attracted less attention than the source of the new heart.
That heart was taken from the body of an anencephalic infant--a baby born with most of her brain missing.
Doctors believe it is the first time in North America that an anencephalic infant has been used as an organ donor, even though about 3,500 such babies are born each year, missing the tops of their skulls and the higher-brain centers that control human thought and feelings.
Left with only a tiny brain stem to power their hearts and lungs, such newborns usually die within hours or days of birth.
Could Be a Milestone
Debate over the Baby Paul case could make the operation a milestone in transplant medicine, influencing ethical and legal guidelines for thousands of future-generation infants, according to doctors and medical ethicists.
Doctors say that if they could routinely use anencephalics as organ donors, with parental permission, much of today's critical shortage of hearts and other organs for infant transplants would disappear. But that raises a number of legal and ethical issues.
Existing laws require doctors to declare a donor brain-dead before removing organs for transplant. Anencephalics, however, die slowly; by the time brain death occurs, vital organs have deteriorated to the point that they are useless for transplant. In the Baby Paul case, doctors avoided this problem by placing the anencephalic donor on a respirator to keep the heart intact as the brain stem weakened and died.
But some critics contend that placing an anencephalic newborn on life support crosses into uncharted ethical territory by artificially prolonging a life, not for the benefit of the patient but for the sole purpose of harvesting organs. Moreover, the prolonged survival of anencephalic babies on respirators may make it more difficult to diagnose when they actually die, creating the prospect that organs could be removed from a living patient.
And while some doctors argue that laws should be changed to legalize the use of anencephalic donors before brain death, others say such a move would usher medical science down a "slippery slope" toward declaring other kinds of patients as fit to be transplant donors, including those in long-term comas.
"This case has really opened up the entire issue . . . of using anencephalic donors," said Dr. Stephen Ashwal, a Loma Linda neurologist who was a member of the transplant team, led by pioneering infant heart surgeon Dr. Leonard Bailey. "It's been estimated there probably are about 3,500 anencephalics born every year, and there are probably an equal number of children with severe kidney disease, liver disease or heart disease that could benefit from those organs.
"But there's obviously a tremendous amount of medical, ethical, religious, moral and political sensitivity to this problem. There is a feeling that somehow . . . we need to review this whole ethical-philosophical question and try to come to terms with it."
Loma Linda officials have scheduled a symposium today to take a closer look at the issue. The conference--entitled, "Anencephalic Organ Donors: Ethical Breakthrough or Breakdown?"--is expected to draw scores of ethicists and doctors. Bailey is scheduled to be a panelist.
At the core of the controversy, doctors say, are today's laws governing brain death, which set clearly defined conditions that must be met before body parts are removed. Brain death is defined as the complete loss of brain function and is diagnosed by the absence of basic reflexes such as respiration, pain response and pupil sensitivity to light--functions housed within the brain stem.
Doctors in the Baby Paul case say they went to great lengths to meet the requirements for brain death.
The donor, a Canadian-born girl named Gabrielle, was was placed on a respirator 16 hours after birth as her brain stem began to fail, according to Dr. Tim Frewen, director of the pediatric critical care unit at Children's Hospital in London, Ontario, Canada, where the case began.
At 48 hours, when Gabrielle no longer responded to skin pressure or light, the respirator was briefly turned off and breathing-reflex tests were conducted, Frewen said. When Baby Gabrielle failed to breathe despite excessive levels of carbon dioxide in her blood, she was declared brain dead.
Eight hours later, a second such test also showed brain death, Frewen said. At that point the tiny body--breathing again on the respirator--was flown to Loma Linda, where Baby Paul was soon to be born with hypoplastic left heart syndrome, an invariably fatal condition in which the heart cannot pump enough blood.