Monday, Mar. 05, 1990
Creating A Child to Save Another
By Anastasia Toufexis
Many loving parents would not hesitate to sacrifice their own lives to save their child's. But should they create a new life to rescue an endangered son or daughter? A Los Angeles couple, Abe and Mary Ayala, has taken just such an unusual step. In April, Mary will give birth to a baby girl who was purposely conceived to serve as a bone-marrow donor for her ailing older sister. Anissa, 17, was found to have a virulent form of leukemia nearly two years ago, and her only hope is a transplant of compatible bone marrow that could allow her to produce healthy white blood cells. Tests indicate that the baby has compatible tissue. With marrow from her sister, Anissa has a 70% chance of & being cured. Says Abe of the unborn girl, who will be named Marissa: "This is our miracle baby."
As joyous as their news is so far, the Ayalas' actions raise some unsettling ethical questions. Chief among them: Is it right to conceive children expressly so that they can be donors? It is a dilemma that faces increasing numbers of parents today as researchers make possible more transplants of organs from living people. For the Ayalas, the drastic measure was a last resort. Neither Abe nor Mary has marrow that matches Anissa's. (Reason: her marrow has a mixture of genetic characteristics from both parents.) Nor does brother Airon, 19, have marrow that is compatible with his sister's. And a search for a suitable nonrelated donor has been fruitless to date, though the hunt continues.
In the fall of 1988, Mary turned to her husband with a proposal: "What if we have another child?" In the roll of the genetic dice, the odds were only 1 in 4 that such a child would have the right tissue type. And there were other daunting obstacles. Abe, 44, would have to undergo an operation to reverse a vasectomy done 16 years earlier, and Mary faced becoming pregnant at age 42.
The decision worries some ethicists, who see it as a step on the path to treating offspring as objects. What if tests show that a baby conceived to be a donor is not medically useful? Parents might be tempted to have an abortion and try again. Babies might be used before birth. For example, transplants of fetal tissue may one day help victims of Parkinson's disease or juvenile diabetes. Will babies be conceived, then aborted to provide fetal tissue? "Children aren't medicine for other people," declares George Annas, a professor at Boston University's medical school. "Children are themselves."
In truth, motives for having babies are never selfless. Children are called to life by adult desires: to experience parenthood, to have an heir, to ensure that a youngster is not an only child. "In a sense we all have children to use them," says bioethicist Michael Shapiro of the University of Southern California. And motives can be mixed. Mary Ayala has long wanted a third child. Abe points out that "if Anissa didn't survive, we'd have another child in the house to help us with our sense of loss." Human needs are so tangled that no one expects -- or wants -- to create rules setting forth acceptable reasons for having a child.
But at least some restrictions on using children as donors seem to be justified. Since infants and youngsters obviously cannot rationally weigh the risks to themselves against the benefits to others, parents are legally entrusted with such decisions. But the parents can hardly be objective in balancing one child's needs against another's. The operation that Marissa may undergo, perhaps when she is six months old, is far simpler than organ transplants. After anesthetizing the infant, doctors will insert a needle into her hipbone and take out a small amount of marrow. The pain will be slight, the risks minimal, and the marrow will regenerate.
The ethical dilemmas of creating a child donor could have been avoided if a suitable non-sibling donor had been available. Experts urge that more money and public-education efforts be devoted to expanding the national registry of potential bone-marrow donors.
Some ethicists believe parents like the Ayalas have a conflict of interest and that an outside legal guardian should serve as advocate for an infant. But others argue that such an intrusion is usually unnecessary. Families are guided by different principles than individuals, and a family's survival is recognized as a legitimate goal. "We expect family members to care about each other and to sacrifice themselves to some extent," notes Mary Coombs, a professor at the University of Miami law school.
By all appearances the Ayalas are not an exploitative family. To them the ethical questions that swirl around them are airy abstractions, not the terrifying reality they daily confront. A frightened Anissa has lately taken to dragging her mattress into her parents' bedroom each night. For her, there is no debate about how her family views soon-to-arrive Marissa. "She's my baby sister," Anissa declares. "And we're going to love her for who she is, not for what she can give me." Who is to say which sister is the luckier?
CHART: NOT AVAILABLE
CREDIT: TIME Chart by Joe Lertola
CAPTION: LONG ODDS
With reporting by Georgia Harbison/New York and James Willwerth/Los Angeles