Infant Organ Donation Still a Medical, Moral Quandary

Paul Gabriel Bailey Holc is a big name for a little boy, but it honors those who gave him a big gift--life.

Paul Holc was known to the world simply as Baby Paul when he was born 1 1/2 years ago with an underdeveloped heart that was replaced by Dr. Leonard Bailey with the walnut-sized heart of Baby Gabriel, born with virtually no brain.

“To leave such a legacy . . . you can’t be anything but proud. To know there’s another little child alive even though there’s no hope for your own child. I swell up I just feel so good,” said Karen Schouten, whose daughter was named after the archangel Gabriel, the herald of good news.

Bailey, too, is proud of being part of Paul’s life. “I feel he’s touched down in all of our lives in different kinds of ways. . . . There’s no dark side to this story that I can perceive.”

Others do see a dark side, however. And because of the controversy surrounding the use of the doomed, anencephalic infants as organ donors, Paul’s transplant was the last.

Some experts contend that the babies should be used because they will die within days and many infant organs are needed. Critics say keeping them on respirators just for their organs is inhumane and a frightening precedent.

Karen Schouten and Alice Holc have never met or even talked to one another, but the two mothers react similarly in the face of such condemnation.

“It doesn’t bother me because I understand you can’t please everybody all the time. There’s always a group of people who are going to disagree and want to play the devil’s advocate on any issue,” Holc said from her home near Vancouver, British Columbia. “What bothers me is when a group of ethicists . . . delve into it and they don’t really seem to know all the facts.

“They don’t even know what an anencephalic baby looks like.”

There is no hope for these infants who are born dying. And there can be no mistake, doctors say, in identifying them.

Victims of anencephaly are born with a brain stem, which controls breathing and neurological reflexes, but no cerebral hemispheres and only a partial skull. Because there is brain-stem activity, they are not brain dead, legally a necessary condition before organs can be removed for transplantation.

Anencephaly is believed to result from failure of the neural tube to fuse in the uppermost portion of the brain during the first month of pregnancy. Like other neural tube defects, the overall incidence is decreasing, mainly because of prenatal diagnosis that often leads to abortion.

About half the 1,000 to 2,000 anencephalic babies born each year in the United States are stillborn, said Dr. Muin Khoury of the Centers for Disease Control’s birth defects branch. The rest die within a few days or a week at most and so receive only “comfort care”--food, water and warmth.

Without life-support systems, their hearts and livers deteriorate because of insufficient oxygen and are useless for transplantation. Kidneys, though damaged, still might be viable.

Meanwhile, 243 children under age 5 were awaiting organs in early May, 24 of them under age 1, according to the United Network for Organ Sharing, which administers the National Organ Procurement and Transplantation Network.

Experts estimate that as many as half of those under age 2 die waiting.

“The problem is, you cannot find baby donors because children routinely don’t die under the circumstances of brain death. You don’t get a child who goes out on Friday night, has a few beers and gets in a car accident,” said Brian Broznick, executive director of the Pittsburgh Transplant Foundation.

The shortage prompted Bailey, of Loma Linda University Medical Center, to transplant a baboon heart into a 12-day-old girl known as Baby Fae in 1984. She died 20 days later amid public uproar. The operation was never repeated.

Experts disagree on whether anencephalic babies feel pain and whether artificially prolonging life might pressure parents into continuing a pregnancy solely for organ donation. Critics fear who else could become targets.

“Once you start defining one set of human beings as being somehow less human than the rest of us, where the heck are you going to draw the line?” asked Leslie Bond, associate editor of the National Right to Life News.

Jen Molnar of Cincinnati, whose anencephalic son, Jeremy, lived three days in 1985, also worries about this “slippery slope.”

“That respirator serves no purpose for that child to live. The only purpose it serves is to promote them as an organ farm,” she said.

“The notion of anencephalics as organ donors has gotten so bound up in philosophical notions that we’ve kind of lost the central focus, that is, salvaging organs,” Bailey said. “We certainly can’t salvage anencephalics . . . We’re very likely to structure the use of the salvage of organs in such a way that all the other baggage isn’t of vital concern.

“I don’t see it as being such a huge issue that human beings can’t come to grips with it in realistic terms and pragmatic terms in ways that would enrich us as a society.”

Loma Linda had no official policy on anencephalic newborns when Alice Holc learned in 1987 that the left ventricle of her baby’s heart was underdeveloped, a condition that would kill him soon after birth. In an unprecedented move, the unborn child was placed on a transplant waiting list.

Meanwhile, Schouten and her husband, Fred, of Barrie, Ontario, had approached Canadian doctors about donating the organs of their unborn daughter, diagnosed in the womb as anencephalic. “We wanted to have some good come from this,” Schouten explained.

Paul, born by Caesarean section, was just three hours old on Oct. 16, 1987, when Bailey’s surgical team made him the world’s youngest organ recipient.

Fred Schouten died two months later of a heart attack at age 36, and his wife said donating Gabriel’s heart “gives me the ability to smile when I think about her and him, instead of cry.”

Also in December, 1987, Loma Linda established a procedure for accepting anencephalic infants as prospective organ donors. The babies would be placed on respirators for up to seven days awaiting cessation of brain stem function.

The California medical center’s program was established at the urging of many parents of anencephalic infants, most notably Brenda and Michael Winner of Arcadia, Calif., who were determined to share their unborn daughter’s organs.

But Jarren Winner was stillborn on Dec. 22, 1987, dashing their hopes. She was cremated and her ashes placed in a silver urn decorated with turquoise, her birthstone. The urn is prominently displayed on a living room shelf.

“I was very proud of her. From the neck down, she was perfect,” said Brenda Winner, 33, who is writing a book titled “Ten Perfect Fingers.”

Above the neck, though, Jarren was fatally flawed.

“If you go right above the forehead and saw off the back of her head, that’s what it looks like,” Winner said. “It was all open. It looked like liver in a butcher market . . . with the brain stem protruding.”

Loma Linda suspended its program last July after only two of 12 babies met brain-death standards. Neither became a donor, one because the organs were no longer viable and the other because no suitable recipient was found.

“Twelve infants were sufficient to show us this is not a feasible technique or solution” to the infant-organ shortage, said Dr. Joyce Peabody, Loma Linda’s chief of neonatology.

Children’s Hospital of Western Ontario, where Gabriel was born, put its program on hold in March. Two of the next three respirator-sustained infants were not brain dead within the required week. A 5-day-old girl’s liver was sent to the United States but the recipient needed another transplant, said Dr. Timothy Frewen, director of pediatric critical care.

With such a low incidence of brain death, Frewen and other doctors wonder if the issue is worth pursuing. The Canadian Pediatric Society plans to make a recommendation at its annual meeting this month. A task force of five U.S. medical societies expects to publish a report this year.

The United Network for Organ Sharing’s directors in February declined to impose a moratorium, but adopted a policy discouraging use of anencephalic organs, at least until further study.

“Society and the medical profession to some extent have learned following Baby Gabriel’s experience,” Frewen said. “Without accumulating experience, one can’t say one way or another.”

Worldwide, 80 anencephalic infants have been accepted as prospective donors since the 1960s, said Dr. David Stumpf, professor of pediatrics and neurology at Northwestern University and coordinator of the U.S. task force. Forty-one became donors, providing 37 kidneys, two livers and three hearts; transplants were successful in 11 kidney cases and one heart case, Paul’s.

Of six such kidney transplants at Children’s Hospital Medical Center in Cincinnati, only one recipient still has the original anencephalic organs, said Dr. Paul McEnery, head of the kidney-transplant program.

That patient, Brian Bourgraf, now 25 and an assistant credit manager for a Wilmington, Ohio, hardware manufacturer, received new kidneys in 1968.

“If that person was here, as he’s looking down, he’s probably saying, ‘I’m glad I did it,”’ he said. “His parents are more than glad, because they’ve seen what’s come out of it.”

Bourgraf frequently is cited by supporters of proposed Ohio legislation to establish a brain-death category solely for anencephalic infants that is based on their ability to breathe without life-support systems. Similar measures have been considered in New Jersey and California.

Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, suspects “a significant number” of parents would donate their anencephalic babies’ organs if they could.

Karen Schouten agrees. “When you see a little baby like Paul it makes it all worthwhile.”