from The New York Times Magazine
cover story, February 28, 1982
note: this is only the first page or so of an 8-page article

Saving Babies Before Birth

Corrective surgery is now being performed on fetuses, a thrilling if sobering fact that raises basic questions about when life begins.

By Robin Marantz Henig

When Andrew Percival was born last Dec. 9, he was an eight-pound bundle of medical history. By all appearances, Andrew was a normal newborn, with the reflexes and level of alertness one expects in a nearly term baby (Andrew had been due to arrive on Christmas Day). But two months earlier, prenatal diagnosis had revealed that Andrew was suffering from a severe and probably life-threatening condition: fetal hydrocephalus, in which the fluid-filled regions of the brain, called the ventricles, expand monstrously and push so hard on the brain itself that nerve cells fail to develop. The result of fetal hydrocephalus is usually profound retardation, blindness, cerebral palsy or death. Andrew was saved from this fate by a team of doctors at Prentice Women’s Hospital and Maternity Center in Chicago, who treated him when they hoped they had time to salvage some healthy brain tissue. They operated on Andrew while he was still in the womb.

Andrew is one of the world’s first travelers to cross the brave new frontier of fetal surgery; he and the handful of others who have had similar treatment represent medical advances that seemed unthinkable even 10 years ago. For doctors are discovering that not only can the fragile and previously inviolable environment of the womb be tapped and sounded to provide vital information about the progress of a pregnancy, but that the fetus itself can tolerate corrective surgery while inside the uterus.

Today, with the aid of sophisticated prenatal diagnosis, obstetricians are able to detect serious conditions in the fetus early enough to treat some of them before irreparable damage is done. Surgeons are able to drain excess fluid from fetal cavities and leave behind tiny draining tubes, called catheters, that stay in place until birth. And, in an even more remarkable and potentially promising event, obstetricians have demonstrated that the uterus itself can be cut, and the fetus exposed for surgery during pregnancy. Last April, after almost 20 years of animal research, ex utero surgery was performed for the first time on a human fetus. Although the baby, born nearly at term, ultimately died because of abnormalities associated with his original problem, the surgery itself was pronounced a success. It proved the feasibility of opening the womb, operating on the fetus and returning it to the uterus for the remainder of pregnancy. And it raised the possibility of prenatal interventions far more extensive than anyone had dared imagine. In monkeys, and perhaps someday in humans, scientists are now trying to stimulate limb regeneration, replace missing bones and transplant healthy cells or even organs into a fetus, which is uniquely receptive to such repair.

"One of the most important developments in all of medicine will be in this field," says Dr. Gary Hodgen, a research scientist at the National Institutes of Health in Bethesda, Md. "Prenatal surgery has been a little sister to obstetrics and pediatrics, but in a decade, I predict, it will be an entity to itself. As people begin to seek help – all those men and women who don’t want to sponsor the life of a damaged individual – more doctors will try to provide what help they can to give the fetus a reasonable chance of a good start in life."

The advent of fetal surgery is at once thrilling and sobering. The method is so new that the risks – and the benefits – are still being weighed. While the number of medical centers around the country equipped to perform prenatal interventions grows – there are now eight treatment centers, three of them new to the field since last November – only 20 fetuses have so far been treated with the advanced techniques now available. At least nine infants, including Andrew, have been saved from lives of severe disability. Seven other treated fetuses have, for various reasons, died since their surgery. Another four births are expected by spring. Case histories of the procedures performed have not yet been published in medical journals, so extensive evaluations of them remain to be made. The dangers of all these manipulations may be negligible, or they may be profound: premature labor, premature rupture of the membranes, infection, rupture of the uterus as pregnancy progresses, puncture of a fetal blood vessel or organ.

And the prospect of such intervention, risky as it is, raises fundamental questions about when life begins and leads, inevitably, to issues of abortion and the right to life. If the fetus can be treated, then is it a patient? If it is a patient, then is it a person? When is this status reached? How much risk should the fetus, and its mother, be expected to endure – especially when there is no guarantee of a normal outcome? And if the treatment of certain conditions in utero becomes commonplace, what are the legal and moral implications if the parent refuses fetal surgery, or opts for an abortion?

"Increasingly, as medical technology makes the fetus more and more accessible to pediatric surgeons, perceptions of the fetus may well change," says the Rev. Richard McCormick of the Kennedy Institute of Ethics at Georgetown University. "Already I hear the doctors involved in this refer to the fetus as their patient. The fetus now begins to make serious claims for a right to nutrition, to protection, to therapy. How can tolerance of abortion be morally reconciled with those claims?"

From the medical perspective, the technique is no less controversial. It is not known yet which birth defects are most amenable to correction in the womb and which can just as easily wait to be treated until after the child is born. It is not known yet which anomalies do irreparable damage to the fetus long before they are detectable and which are essentially plumbing problems that can be corrected, affording the baby a normal life. In short, no one knows yet whether the procedure itself does any good.

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Jeanette Percival of Bloomingdale, Ill., was not thinking about those issues last October, when she was told the fetus she had been carrying for more than six months had hydrocephalus. "It was such a grim prognosis," recalls Mrs. Percival, 31. "My first thought was to terminate the pregnancy; my daughter, who is nearly 3, was born with heart problems. But no one would do an abortion at 29 weeks." (When a medical problem appears, abortion is considered an option until the 26^th week of a 40-week pregnancy.) The Percivals’ obstetrician then offered them an alternative to the dreadful certainty of a damaged child. "We began to think about fetal surgery. If something could be done in time, we thought we should take the opportunity to do it, even though we knew there were risks involved."

It was not easy, though, to find someone willing – and able – to do the procedure. Quite unlike an amniocentesis, which constitutes most obstetricians’ experience with inserting instruments into the uterus (fluid from the womb is withdrawn through a hollow needle for prenatal diagnosis), the goal of fetal surgery is to puncture the fetus. The doctor then tries to ease a catheter into precisely the right place in the fetus’s body and leave it there. As a target, the fetus is tiny – usually no more than a foot in length and a pound in weight – and incredibly elusive. Since the fetus is suspended in amniotic fluid, it floats away from the touch of the needle, which holds the catheter. And since the entire operation is done through the mother’s abdomen, the doctors cannot see or touch the fetus directly. They are guided only by ultrasound, which bounces high-frequency sound waves into the uterus and returns them to form a moving shadow of the fetus on a small television-size screen. The fetus’s position, and the position of the drains and tubes being inserted, can only be inferred.

Despite these problems, a pioneering team of doctors in Denver had already tried the technique on a hydrocephalic fetus. With the Colorado doctors serving as consultants, Dr. Richard Depp, an obstetrician at Northwestern University Medical School in Chicago, agreed to help the Percivals. Dr. Depp had 10 years’ experience with an established intrauterine procedure – blood transfusions administered directly to fetuses suffering from severe anemia.

Mrs. Percival was now 30 weeks pregnant – 10 weeks away from term. . .