Hers had been a "perfect" pregnancy. No complications. Hardly any morning sickness. In retrospect, Brenda Winner says, "it was too perfect."
So when the 30-year-old mother-to-be went for an ultrasound test at Santa Teresita Hospital in Duarte, she expected it to be purely routine. She was thrilled to see her 5 1/2-month-old fetus' hands and feet and legs and shoulders clearly outlined on the screen, all looking normal. "But I never looked for a skull," she says now.
When the test was finished, a nun in the room started to cry. She kissed Winner on the cheek and said, "My prayers are with you. God bless you."
"And I still didn't catch on," Winner recalls.
Only when she and her husband, Michael, met later with their obstetrician did they learn there was something horribly wrong. "It was a heartbreaking message for them and for me," explains Dr. Suvannee Vidhyapum. "I said I was very sorry to inform them that their baby was incompatible with life."
Missing Most of Its Brain
The Winners' first baby, she told them, was an anencephalic. It was missing most of its brain and would die within hours of being born. But during the pregnancy, while totally dependent on the mother, it could grow and develop in the womb like any fetus.
Michael began to cry first. "And he got hold of me and I started to cry," Brenda says. "And then Mike turned to the doctor and asked, 'What options do we have?' "
The couple decided that day against an abortion. "We knew what we had to do," Michael said. They decided to carry the child to full term with the wish that it might give life to other infants in need of organ transplants. "I don't want to make this baby a total waste," Brenda explained.
And yet it is a wish that may go unfulfilled because of a long-standing controversy over the morality and legality of using anencephalic babies as organ donors. The issue surfaced dramatically in October in the case of Baby Paul, an infant who became the world's youngest heart transplant recipient during an operation at Loma Linda University Medical Center.
The pioneering operation itself attracted less attention than the source of Baby Paul's transplant heart--an anencephalic baby girl from Canada who had been placed on a respirator 16 hours after birth as her brain stem began to fail.
Anencephalic babies, numbering about 3,500 a year in the United States, are born missing the cerebral hemispheres that control thought, motion and sensation. They usually stop breathing and die within a day of birth. But the use of their organs for transplants is controversial because physicians consider them to be dying--not dead--and it is morally, ethically and legally unacceptable for doctors to remove organs from people who are not brain dead.
Once anencephalic newborns become brain dead, they can be organ donors, with parental permission, just like any other brain-dead infant. But the issue becomes confused when anencephalic newborns are placed on respirators after birth, making it more difficult to diagnose when they actually die. Without respirators, the vital organs deteriorate to the point where they are useless for transplant.
So far, no hospital has agreed to comply with the Winners' unusually open and public request to prolong the life of their anencephalic newborn not for the benefit of the infant but for the sole purpose of harvesting organs.
However, administrators and doctors at Loma Linda and USC's Women's Hospital, as well as officials of the Los Angeles County Department of Health Services, will be meeting this week to consider the Winners' plea.
But time is growing short. Brenda is scheduled to give birth Dec. 12.
"This is a real tragedy because these people want something good to come from their loss and, yes, we would like to help them out," says Dick Schaefer, director of community relations at Loma Linda University Medical Center. "An anencephalic donor could help give life to four or five people. But there are legal action issues why we don't accept."
Taking Up the Cause
"It's a hot potato right now," acknowledges Dr. Lawrence Platt of the USC Medical School, an expert in maternal fetal medicine who has personally taken up the Winners' cause. Another prominent doctor in the field, Dr. Leonard Bailey, the pioneering infant heart surgeon at Loma Linda, seems optimistic. "We don't have a protocol just yet," he says. "We're not quite ready, but it's conceivable."
For most parents of anencephalic babies, the hopelessness of the situation is not just very painful but also very private. But the Winners say they have decided to discuss their case openly because, they feel, people have been silent too long out of shame. "I couldn't just put it in the closet and leave it," Brenda Winner says. "I think if I couldn't talk about it that I would have been a basket case."