WHOSE LIFE IS IT, ANYWAY? : A comatose woman is raped--and impregnated. Her parents opt against abortion and now they’re grandparents. The debating has only just begun.
Mother and child, reports the hospital spokesman in Rochester, N.Y., “are doing well.”
Baby, born nine weeks premature, initially needed oxygen but now breathes on his own. “Mother is resting quietly.”
As she has done for a decade. Last week, after a labor of about an hour, she became a mother. She doesn’t know it.
She never knew she was pregnant. Nor that she was raped. But today, still in the vegetative state where she has existed for 10 years, diapered like her baby and fed by a tube, she has a son.
And her parents, who decided to continue the pregnancy, have a grandson.
Certainly, other women have lapsed into comas while pregnant and borne children, but many believe this is the first case of an already incapacitated woman conceiving and giving birth. That she had no choice--much less knowledge--has made the case especially unsettling, almost grotesque.
“She was an incubator, that’s what she was,” says George Annas, chairman of the Health Law Department at Boston University’s School of Medicine. “The reason you have babies is to feel them, love them, raise them, teach them, know about them. She’s had none of that and never will.”
“Who the hell do we think we are to think we know better than her parents on something as bizarre and complicated as this?” asks Susan L. Goldberg, a law professor at Widener University School of Law in Wilmington, Del.
The new mother lies in a hospital bed, oblivious not only to her condition and her child, but also to the ethical confusion that surrounds her. There is no consensus on who should make life-and-death decisions for people unable to decide for themselves. Nor on how such decisions are reached. Or whose interests are paramount.
Scientific progress is unshackling medicine from its old ethical moorings. A history of railing against the limits of our existence has ill-prepared us to deal with issues that accompany our newfound capability to extend them.
The woman, whose name has not been released, had a life full of promise when her car smashed into a tree on an icy rural road in 1985. She was 19. But she didn’t die.
Instead, neurologically devastated, the woman became one of 20,000 to 40,000 Americans living in what’s called a persistent vegetative state, or PVS. Such patients cannot think or feel. Their biological life can be prolonged, but conscious life can never be restored.
“It’s very difficult for families to let go, especially when the loved one is young,” says lawyer, philosopher and psychoanalyst William J. Winslade at the University of Texas Medical School in Galveston. “It’s not immoral to retain hope, but it’s not rational to retain that hope as the years go by. But it’s very hard to change the momentum.”
When her parents learned New Year’s Eve that their 29-year-old daughter was pregnant--raped in the suburban Rochester nursing home that cared for her, her growing belly undetected for 4 1/2 months--they decided not to end the pregnancy.
The parents are Roman Catholic and believe their daughter would have rejected an abortion. For a couple of months after the pregnancy was discovered, an old parochial school chum talked often to the press about her friend’s antiabortion stance in the classroom. The parents’ decision came to fruition March 18 when a 2-pound, 11-ounce baby boy was born.
At birth, police took a blood sample for DNA testing to determine paternity. Already, DNA from amniotic fluid had identified a genetic link to the prime suspect, John Horace, 52, a nurse’s aide fired in September from the same nursing home, says Brighton Police Chief Thomas Voelkl. Police say they are waiting to obtain a blood sample from Horace before he is arrested. He is now serving a six-month sentence for molesting a physically disabled patient at the same facility. He has also pleaded guilty to an unrelated charge of posing as a sex therapist.
All along, the family has requested the anonymity accorded rape victims. They have stolidly remained silent about the choices they faced and the decisions they’ve made--a silence that has disturbed some ethicists, who argue that the case is a matter of grave public concern.
“I am very troubled by the secrecy. These are such bizarre circumstances the situation warrants and justifies public inquiry,” Winslade says. “I think the parents may have a conflict of interest. They must have ambivalent feelings about a child as a result of rape.”
National Organization of Women Vice President Kim Gandy finds using the mother as a vessel violates the woman’s “bodily integrity--already violated once by a rapist.”
“What exactly do you tell a child? That his father is a rapist and his mother was in a coma when he was conceived and born?” she asks.
The pregnancy was “one blessing in a tragic decade of waiting for their daughter to wake up,” says Suzanne Schnittman, consistent life ethic coordinator for the Catholic Diocese of Rochester. “She was already violated by the rape. Violating her again by an abortion would certainly not be life-affirming or show care or love for her.”
Even among Catholics, though, there is argument about what is “natural.”
“I think it isn’t ethical to keep people alive artificially by maintaining their nutrition and hydration. But as a society, we have a difficult time coming to that position as real policy,” says the Rev. Dennis Brodeur, a St. Louis, Mo., diocesan priest who is an ethics professor and editor of a medical ethics newsletter.
The Rochester family’s decision to protect the life of the fetus, he says, is consistent with their earlier commitment to keep their daughter alive “at all costs.”
“The religious answer seems simple and sincere,” Brodeur says, especially when there is no clear social policy. “It may well be that the final and ultimate decisions are made within the context of the small family unit. Like it or not, that is where those decisions are made right now.”
Boston University’s Annas argues that this case is the public’s business because a crime has been committed and its results have public implications.
“We have to take a position on this. We didn’t prevent the rape, so what are we going to do about it?”
When there’s a dispute, he says, our society tends to maintain the status quo. But what was the status quo in Rochester?
“People saw her pregnancy as the status quo--don’t do anything, see what happens. I say no.” Terminating the pregnancy, he says, would have restored the status quo.
For argument’s sake, Annas posits the parents should decide what to do. “If they can make a credible argument, fine. But if they say they want the baby, that’s totally inadequate,” he says.
“It’s an illegitimate reason to continue the pregnancy. If that reason is sufficient, then artificial insemination while a woman’s in a coma would be OK and everybody would be horrified--or should be.”
Annas says we need to discuss the “horrible and awful and important issues” involved in making decisions for those who can’t.
“It is right to try to figure out what she would want. It is wrong to try to figure out what we want,” he says.
Examining the practices of nursing homes where the most defenseless members of society become prey is easier than deciding how to deal with the results of negligence. The Rochester woman may be the first known PVS patient to conceive and give birth to a baby, but she is not the first to become impregnated through rape. Guardians have quietly had fetuses aborted.
Like the Rochester woman, Andree Nerpel’s adult life was just starting in 1968 when, soon after graduating from Grant High School, it ended in a car crash. At 18, she was in a coma and she’s still in it. In 1983 at North Hollywood’s Laurelwood Nursing Home, she was raped. It was her grandmother who noticed that she’d missed several menstrual periods.
The Nerpels never filed criminal charges, but they did file a civil suit against the nursing home for negligence. In 1989, a San Fernando Valley Superior Court jury awarded Andree Nerpel $7.5 million in damages. But Judge David M. Schacter set aside the award, finding that Nerpel’s attorney had failed to prove that his brain-dead client had been aware of the rape and pregnancy and therefore harmed by it.
Unlike the Rochester family, the Nerpels decided to terminate the pregnancy.
“No, of course we never considered letting it continue,” recalls the victim’s father, Charles Nerpel, 82, of Van Nuys. “We had one invalid on our hands, what did we need with a baby? We were not young people. So we aborted the pregnancy and that was the end of that.”
His daughter, now 46, is still alive--”if that’s what you want to call it”--in a nursing home in Ohio.
When the Nerpels ended their daughter’s pregnancy, it was a private matter. And rightly so, says law professor Goldberg: “In general, I don’t think it’s appropriate to question the decisions of guardians when they’re deciding for their children.”
Goldberg, whose fields are reproductive rights and medical ethics, is currently writing on surrogate decision-making. She says there is no practical alternative to accepting a family’s decision.
In Rochester, moreover, the parents were the acknowledged decision-makers long before the pregnancy.
Nonetheless, the situation does give her the “heebie-jeebies.”
“This case confounds me--so many issues with no good answers. The parents are looking for solace in a bad situation. I do feel uncomfortable about the parents making this decision. It might be for all of the wrong reasons. But this is their daughter. They care about her.”
Guardians are required to act in their ward’s best interests or to meet the legal standard called “substitute of judgment.” This means making choices a ward would have made if she could. Substituting judgment is tricky, Goldberg says.
“Even if everyone agrees she was pro-life at 19, she is now 29 and has lived in PVS for 10 years. Do we ask, ‘Was she pro-life?’ Or do we ask more appropriately, ‘Would she be pro-life as a rape victim in a persistent vegetative state at 29 years of life?’ ”
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