Dying to Have a Family

Children are the hands by which we take hold of heaven, Henry Ward Beecher once observed, which may be as good an explanation as any for why a woman facing death would go to any length to bear a child. And what greater gift could she give than the gift of a healthy life--even if she might not be there to share it?

That was the question on the table last week with news of the birth of the first baby ever bred to avoid the risk of early-onset Alzheimer's disease. There may be only a dozen families in the world that carry this particular gene mutation, which causes dementia and death, often by age 45. One 33-year-old woman knew all too well what the disease does to a brain--and a family. Her father died at 42; her sister began declining at 38 and within five years needed full-time care; and her brother's memory began to crack at 35. A professional geneticist, the woman also knew what it would take for her and her husband to have a healthy child. By prescreening her eggs for the defective gene, doctors were able to insert only healthy embryos during in-vitro fertilization. Last week the Journal of the American Medical Association reported that the woman gave birth a year and a half ago to a girl who was spared the family curse. The child, however, almost certainly will not be spared the experience of watching her mother fade away and die, probably before the girl is 10 years old.

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The case was more an ethical than a scientific landmark. There was the familiar slippery-slope question that arises with all genetic tinkering: Today we screen for deadly genes, tomorrow for baldness and tone deafness? But last week's case had a whole other layer of tragedy and quandary. Is it fair for a woman to give birth who will probably "not be able to care for or even recognize her child in a few years?" asked an editorial in J.A.M.A. In the arguments over life and choice, the right to have a baby is implicitly absolute. Saul Bellow's virility is celebrated when he becomes a father at 84, as is Larry King's when he has a baby at 65, months after angioplasty. Does a shortened life expectancy make a woman more unfit for motherhood?

The mother's children--she is reportedly pregnant again, this time with twins--are likely to be raised by a single parent. But this is true for 1 in 4 children, and it has become an accepted medical practice to help widows become pregnant through artificial insemination with the late husband's sperm. Those who feel that having a baby is a basic human right argue that this couple behaved in an especially ethical way by going to such effort and expense to ensure that their children would be born free of the disease. In this sense the case is comparable to that of a woman with cancer who forgoes chemotherapy in the hope of having a healthy baby, knowing that her own life may be shortened in the process.

Those who focus as much on responsibilities as on rights note that "when people adopt children, the agencies that help them must think about the well-being of the child," says Erik Parens, a research associate at the Hastings Center--and that includes the couple's capacity to function as parents. It would be hard for a woman with such a medical history to adopt. But the reproduction business is virtually unregulated and profit driven, with the ethics improvised at best. "There is a need for general oversight," argues Parens, "instead of the free-for-all we now have."

There is also the need for compassion. If having a child is one of life's divine experiences, why should it be denied to a woman already robbed of what she thought would be the rest of her life, the chance to grow old with her husband or hold a grandchild? Does the gift of life and love truly lose its value just because the mother who gives it will not live to see it through?

Kimberly Quaid, a psychologist who counseled the family during the process, describes the parents as "10 times more thoughtful about what they chose to do than other people who have children." She is horrified by the suggestion that the couple should have remained childless. "Because this woman knows she's going to develop dementia in the next decade or two, it's wrong for her to have children? That's going down a road of getting involved in people's reproductive rights that we've never gone down before." The parents are not relying on public financial support, she notes. "They are not asking for anything but to be left alone." And they are undoubtedly praying that by the time the mother's symptoms develop, science may be able to save her, just as it has already saved her baby.