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Troubling Questions : Fetal Doctors--They Scan for Defects


November 16, 1986|BARRY SIEGEL | Times Staff Writer

Over the last five years, Dr. Greggory R. DeVore has looked at thousands of human hearts, each the size of a thumbnail, and he has learned much from them.

He can measure, in a 15-week-old fetus, the thickness of the heart wall, the size of the aortic valve, the dimensions of the four heart chambers, the number and nature of the heart's contractions. Drawing on what he has seen, DeVore usually can recognize when something is wrong.

That makes him proud. He describes himself as a "fetal advocate."

But there are days when his skill leads to a fetus's demise.

One morning in his office at the Genetics Institute in Alhambra, aiming his ultrasound machine at a pregnant woman's abdomen, DeVore saw on the sonar screen one slightly dilated fetal kidney, a small, incidental malformation that could be easily treated.

The woman was reassured.

Eager to refine his knowledge of fetal hearts, DeVore then chose to look also at the cardiovascular system. He found another malformation, a small hole in the heart, a sort that often closes on its own. He felt pleased with his ability to spot such a subtle defect.

But this added news frightened the woman, and she decided to terminate her pregnancy. When she told him, DeVore winced, fighting a vague apprehension.

If I had not done that, if I hadn't been so thorough, that fetus would be fine, he thought. A lot of folks are born with holes in their hearts and they close after birth. I wish I hadn't turned on the machine.

This is the conflicted world of the newly evolved, highly specialized fetal doctors. Their ability to see and diagnose defects has far outpaced their ability to cure them, or even to describe accurately how they will affect the babies. The chief therapy for most problems remains selective abortion.

Unborn Patient

The doctors' science, transforming the amorphous embryo into an unborn patient, has far outstripped their community's concepts about the nature of the fetus. Troubling questions for everyone, on all sides of the abortion debate, arise about the moral status of the pre-viable but treatable fetus. Concepts such as eugenics and euthanasia take ever larger form. Advancing technology already on the horizon promises even greater complexities.

Above all, the doctors deal with uncertainty, moral and medical. Most cases present several choices, none clearly better than the others.

Many diagnoses and prognoses are ambiguous. Doctors can see a microscopic nick on the tip of a chromosome but they cannot always say what it will mean. They can tell a mother her baby will have spina bifida or Down's syndrome, but they cannot tell her whether it will walk or talk.

Doctors can keep fetuses alive that would not have survived in the past, draining dangerous fluids from heads and kidneys, but when born these babies sometimes are badly retarded or need constant dialysis for chronic kidney failure.

Mistaken diagnoses at times lead to termination of healthy fetuses. Overlooked defects lead to the birth of badly damaged babies.

Defects found late in pregnancies, past the time for a legal abortion, force hard decisions about the risks and benefits of intervening aggressively at birth with such procedures as a Caesarean section.

Some Defects Treatable

Some defects can be easily treated after birth and raise questions about whether they should be diagnosed at all, when the only alternative would be to terminate.

Some couples use prenatal diagnosis to learn the sex of their fetus, and abort if it is not what they want.

Knowing of these difficulties, more and more couples are still turning to prenatal diagnoses, three times as many as just a decade ago. Where the doctors once saw only older women, who are at higher risk, they now also see many younger women under 35. Some seek reassurance, some seek a perfect baby. Some come because a cautious family physician, worrying about lawsuits, wanted a specialist's opinion.

So doctors and patients alike wrestle with an overwhelming wealth of information not available five years ago. Once, babies were either born or they were not. Now there are options.

Growing Group of Experts

DeVore, 40, an associate professor of obstetrics and gynecology at USC, is among a small but growing group of fetal-maternal experts who face these issues every week. Others include two whom DeVore studied under at the Yale University Medical School, obstetrician John C. Hobbins and pediatrician-medical geneticist Maurice J. Mahoney.

DeVore's colleagues at the private Genetics Institute and at Women's Hospital in the Los Angeles County-USC Medical Center include Lawrence D. Platt, USC professor of obstetrics and gynecology; Janet Horenstein, USC assistant professor of obstetrics and gynecology, and Robert Wassman, a pediatrician and medical geneticist.

They all offer much the same comment about their work. They have little time for philosophy, they say. They are willing to steel their minds and live with complexity and gray areas. They accept their perpetual uncertainty.

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