A Matter of Death and Life : Couple’s Wish to ‘Harvest’ Their Anencephalic Baby’s Organs to Help Others Heats Up a Long-Standing Legal, Moral Controversy

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.”

Just a typical working-class couple trying to start a family, the Winners shrug off any suggestion that they are displaying superhuman courage about a tragedy that almost any other newlyweds would find unbearable.

“A lot of people say that,” Brenda Winner says. “But I don’t look at it as being brave.”

“There’ve been some down times,” Michael acknowledges. “But every time there’s been a down time there’s been something else that comes through that pulls us back up.”

“Like Baby Paul,” Brenda interjects.

The couple believe that most of all their decision to take on the medical and legal establishment is what’s keeping them from becoming mired in grief. “The strength that we’ve got is from our fight,” Brenda explains. “It’s kept us both from thinking about anything else other than the good that can come of this.”

Planned a Family

The first pregnancy is always special, parents agree, and the Winners’ was no exception. After meeting in New Mexico, where Brenda was tending bar and Michael was working as a journeyman lineman for an electrical contractor, the couple married a year ago last October and knew they wanted to start a family almost immediately. A large family, in fact, since Brenda was one of seven children and Michael had lost his younger brother in an accident.

They had no trouble conceiving. Just weeks after Brenda went off the Pill, her pregnancy test was positive. The excited couple moved into a rental home in Arcadia with an extra bedroom that they could turn into a nursery.

Brenda became a model mother-to-be. She quit smoking and drinking, wouldn’t put gasoline in the car to avoid inhaling the fumes and stopped working so as to take better care of herself.

But when it came time to undergo an alpha fetoprotein screening--a test that in all likelihood would have sounded the first alarm about her baby’s condition--in the 16th week of her pregnancy, she refused, fearing harm to the fetus.

She does not regret it. “Even if I had taken the test and it had told me there might be a birth defect,” she says, “I still would have carried this baby full-term. My attitude would have been, ‘Let me see it for myself.’ ”

Opted for Ultrasound

Five weeks later, she did decide to have an ultrasound test--but only because she wanted to pinpoint exactly how far along she was.

When she and Michael received the results, they went into an emotional tailspin.

“The doctor told us to go home and think about what we wanted to do,” Brenda recalls. “But we didn’t have much time because if we decided to abort, it had to be done immediately.”

They were shocked. They were frightened. And “then we sat and thought about everything we had done, everywhere we had gone, since I was pregnant,” Brenda says. “And we wondered, ‘Was it something we had done that caused this?’ ”

By this time the fetus was a “kicking, moving, alive baby,” as Brenda puts it, and they just couldn’t terminate the pregnancy, no matter what sort of ordeal they were letting themselves in for. It was Suvannee who suggested the possibility of donating the baby’s organs if it was carried to full term.

“I said, ‘How can I know that we can donate?’ ” Brenda recalls. “And she said, ‘I’ll take care of that and call you back.’ ”

A day later, Suvannee phoned. She had talked to Loma Linda and had been told that the hospital could use only the cornea of the baby’s eye. “When we found out about the baby, that was devastating enough,” Brenda recalls. “But when we discovered that the organs would all be healthy and normal and that babies who need a liver or heart couldn’t get them, well, that’s when we started getting into it.

“And believe me,” she adds, “I never realized how deeply we were going to get into it.”

Studied Subject

Though Brenda had never had any medical training, and Michael is the sort of man more comfortable popping open a beer and watching “Monday Night Football” than talking about complex medical ethics, they went to the local library and learned “everything there was to know” about anencephaly.

And what angered them the most was the opposition of right-to-life groups to any proposal to change the law and make it easier to use anencephalic babies as organ donors.

“All I can say is that if something like this would hit their home, they might take a different attitude about it,” Brenda says. “I’ve told them that I respect what they believe but they can’t tell me what rights I’ve got or not got. And Michael and I feel that as the parents of this baby we can do what we want to do considering that the baby is doomed to die.”

“See,” Michael adds, “I don’t understand why we give doctors all this knowledge and then we don’t let them use it. It just doesn’t make any sense. Because they’re the only ones that know what to do with this baby and do it properly. And here we’ve got some people who don’t even know how to spell anencephaly who end up making the laws against it.”

For weeks now, while Michael goes to work, Brenda spends her days trying to contact legislators, hospital administrators and anyone else in a position of influence to plead her case. One doctor she phoned openly worried about her emotional stability because she was pressing the issue so hard. “He said, ‘Just give up on it. Just have the baby and get this part of your life over with.’ But I know that he’s wrong,” Brenda said.

‘I’ve Always Been a Fighter’

“I tell you, the more negative reaction I encounter, the stronger I get. I honestly believe that God had to bring these babies into the world and I think he just picks and chooses who to bring them to. I’ve always been a fighter. And maybe that’s the reason I was chosen,” she reflects.

“We’re OK,” Michael said. “We can accept everything that’s going on, and we support each other.”

As for their own relationship, the couple believe it is stronger. “Michael and I have always been very compatible and communicative,” Brenda says. “But this has brought us closer.” Michael agrees: “We’ve always talked.”

Indeed, they are able to talk about their baby’s imminent death with each other, with their families, even with strangers at the local supermarket. “These are people we see every day and so we tell them the baby’s not going to live. We have to,” Michael notes. “Don’t you think it’s fair to save them the embarrassment of asking afterward, ‘Where’s the baby?’ ”

And even though she tries to be as matter-of-fact as possible, “it crushes people. It brings them to their knees. It’s devastating news to hear,” Brenda says. So devastating that the Winners have to comfort others about it, rather than the other way around.

“People just take it so hard,” Brenda explains. “We find ourselves so many times saying to somebody, ‘Hey, it’s going to be OK.’ But once they talk to us and they realize that we have a grip on it, then they lighten up.”

Already Brenda and Michael are looking ahead to having a second baby sometime in 1988. And maybe another in 1989. “And I know one mother who had an anencephalic child who had three children afterward who are all healthy and normal,” Brenda points out.

But, for now at least, the extra bedroom will remain empty. The used baby clothes they received by the bagful from friends will remain unworn. The baby stroller and playpen they bought will remain idle.

And, still, the Winners refuse to feel sorry for themselves.

Maybe their baby’s organs will be utilized, maybe not. But the Winners will continue trying to change the ethical and legal guidelines for thousands of future-generation infants. “Maybe it will open the doors for something good to happen for somebody else with an anencephalic child,” Brenda says.

“And then they won’t have to go through this.”