Legal Definition of Death Is Questioned in Florida Infant Case
By SABRA CHARTRAND
Published: March 29, 1992
A baby girl born a week ago without a fully formed brain will probably not live longer than a few weeks. But if her fate is unambiguous, less clear is the precedent that might be set by efforts in Florida to accelerate her death so that her organs can be used to save other children.
The baby, Theresa Ann Campo Pearson, was born last Saturday in Florida with a partially formed brain stem, the part of the brain that controls breathing and heartbeat. Though her body and face are fully developed, the top of the baby's skull is missing. A surgical cap covers her exposed brain stem and the area where the bulk of her brain, the cortex, would normally be.
"Our brain stems do not differ substantially from the brain stem of a fish," Dr. Robert J. Levine, a Yale University professor of medical ethics said in an interview. A baby like Theresa Ann "has more in common with a fish than a person," he said.
Infants born with no brain cortex, a condition known as anencephaly, probably do not experience anything, even pain. So, some people, including Theresa Ann's parents, say there is no harm in declaring the babies dead and donating their organs. But others argue that if such babies are excluded from the legal criteria for brain death, it may be a matter of time before other medical conditions are also omitted. Specter of 'Organ Harvesting'
And for many people, this case raises the specter of "organ harvesting," the notion that babies might be born or kept alive for the purpose of using their organs for transplant.
"The problem is almost entirely one of a slippery slope," said Dr. Norman Fost, a pediatrician who is the director of the University of Wisconsin's medical ethics program. "We have to be careful who we take organs from, because there are a lot more than anencephalic infants out there."
And medical experts agree that any change in brain death policy could undermine public trust in the nation's organ donor program, which already has difficulty getting people to donate organs. They agree that Americans are already wary of donor programs because of a popular perception that organs might be taken before a person is really dead.
"There's a refusal to accept the reality of death at work in this," said Dr. John Fletcher, director of the University of Virginia's Center for Biomedical Ethics. "And an overvitalistic understanding of personhood, one dependent on biological functions."
"But what makes us human is what goes on upstairs in the brain, not downstairs in the brain," he added. Decided to Continue Pregnancy
That point of view is evidently shared by Theresa Ann's parents, Laura Campo and Justin Pearson. They knew from prenatal tests that their daughter would be born without a brain cortex. They decided to proceed with the pregnancy and donate their daughter's organs for transplant.
Ms. Campo and Mr. Pearson wanted to have Theresa Ann declared brain dead rather than wait for her natural death because as her condition declines so will the viability of her organs. But a Florida state judge said the baby was not brain dead because of her brain stem activity, and a higher court supported that ruling. Lawyers for the parents said they would take their case to the Florida State Supreme Court on Monday.
The judges decisions are based on the legal definition of death, which in most states requires "irreversible cessation of all functions of the entire brain, including the brain stem."
Some doctors, medical ethicists, lawmakers and parents of anencephalic infants say that definition should be amended to exclude what they call "brain absent" babies.
"There is anxiety over taking organs from people who have the potential for resuming sentient lives," Dr. Levine said. "But with anencephalics you don't have to be extra safe. They never had sentient lives and never will."
"But there is not much pressure to come up with a new policy because this condition is relatively uncommon," he added. "And the prevailing sentiment among transplant surgeons is they would rather not do it, not for ethical reasons, but because it creates ill will in the community."
Still, many medical experts agree that anencephalic infants are in a special category. But even they have varying opinions as to what that means.
"In effect, you don't have a person who deserves the protections normally given to individuals born with a brain but who died," Dr. Fletcher argued. "I think anencephaly is the only exception you have to make to brain death policy because it's a unique condition."
Dr. Fost agreed that Theresa Ann's "case crosses the brain death boundary, and with careful discussion we could set the boundary somewhere else."
"But we can't agree, and we can't easily diagnose brain cortex death," he added. "It makes perfect sense to take the organs in this case -- if the world were ending tomorrow or if this were a deserted island. The problem is, you can't draw a box around this case."
About 2,500 women in this country carry anencephalic babies every year, said Dr. Mark I. Evans, a professor of genetics at Wayne State University. The condition is caused by a failure of the neural tube to close very early in gestation.
"Neural tube disorders comprise a spectrum from anencephaly at the extreme end to milder versions of spina bifida," Dr. Evans said. People can live with spina bifida, a failure of the spinal cord to close.
"There are about 1,000 births, because the others are detected and the pregnancies terminated," he said. The condition is discovered through routine prenatal tests for alpha feto protein, which leaks from the fetus' defective central nervous system into amniotic fluid. 'Smiling Through Tears'
Karen Schouten was in her eighth month of pregnancy in 1987 when doctors discovered that her daughter was anencephalic. Like the Florida couple, Mrs. Schouten and her husband decided to continue with their pregnancy and donate their daughter's organs.
"We talked to a few hospitals before she was born and they poo poo'd us," Mrs. Schouten, who is 31 years old and lives in Ontario, recalled in an interview. Finally, Loma Linda University in Southern California, which pioneered infant transplants, agreed to accept their baby.
Their daughter, Gabriel, died naturally when she was 2 days old, and her tiny heart was immediately transplanted into a baby boy.
"It was done beautifully," Mrs. Schouten remembered, "and with respect for my husband and I, for our baby, for her life.
"We can't shortchange these babies. Every human being born has a right to live their allotted time with dignity, whether it's two days or two weeks."
But even though Mrs. Schouten's daughter died naturally, the transplant was controversial and gained widespread attention because of the idea that babies might become a source of organs.
But Mrs. Schouten said she was "probably one of the proudest people around -- to know another little human being is alive when you've lost your own child. It's like smiling through tears."
Photo: Laura Campo and Justin Pearson, the parents of Theresa Ann, who was born without most of her brain, decided to proceed with the pregnancy and donate their baby's organs for transplant. They listened at a hearing on Thursday in which a Florida judge ruled that the baby's death could not be accelerated so that her organs could be donated. (Associated Press)