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Giving Baby a Chance, Before Birth

Surgery in the Womb?

'Miracle Cure' Not Without Its Risks continued...

Their son, Nathan, has not progressed as well as they had hoped. At 7 weeks of age he needed a shunt, and at 2 years old he is not yet walking. His cognitive abilities, however, are on target. Janice Lamb, one of the first women to have the surgery at Vanderbilt, was 28 weeks' pregnant when doctors operated on Nathan. Now doctors are operating as early as 21 weeks.

For parents whose children are not the medical miracles for which they had hoped, it can be painful to see other kids who are progressing so much faster, Lamb says. But small accomplishments, such as Nathan's learning to clap, to roll over, and to crawl, make her feel that the operation was worth it.

Even ardent supporters of the procedure acknowledge it is not a miracle cure. It is risky to both mother and fetus, and carries a host of ethical and moral questions. Until now, such high-stakes operations were undertaken only to correct defects that otherwise would kill infants. With spina bifida, surgeons are attempting to enhance life by treating a defect that is disabling but not necessarily deadly.

For women who receive the surgery, there is a risk of excessive bleeding, infection, and sometimes fatal side effects from drugs to control premature labor. They must have future children by cesarean section. And virtually all infants who have fetal surgery are born premature, increasing their chances of complications.

Best Use of Resources?

In researching her book, The Making of the Unborn Patient, sociologist Monica Casper concluded that in the early years of fetal surgery, women were not adequately informed about the risks, though she believes that has changed. Doctors at Vanderbilt, in particular, she says, "have made themselves very open to outside ethical and legal analysis. They are not behaving in a secretive way."

But Casper argues that the procedure "is not the best use of resources. If we want to save babies, there are all kinds of other ways to be doing it. We can be providing better prenatal care and nutrition to all women in the United States rather than spending money on this experimental procedure."

Normally, when babies are born with spina bifida, doctors perform surgery within 48 hours to cover an open lesion on the newborn's back. By performing it before birth, doctors cannot correct nerve damage that has already occurred but, instead, hope to prevent additional damage or paralysis.

What's more, surgeons have found that fixing the spinal defect appears to correct hindbrain herniation, which causes death associated with breathing problems in 15% of children with spina bifida. It also reduces the need for a shunt by between 33% and 50%, according to Vanderbilt's research.

"If we have the chance to lessen the extent of injury, why wouldn't we do that?" asks Joseph Bruner, MD, director of fetal diagnosis and therapy at Vanderbilt, on a fetal surgery web site started by parent Todd Gardener to get the word out about the procedure.

The operation, which costs upward of $35,000 and is covered by at least one large insurer -- Aetna U.S. Healthcare -- requires a team of medical specialists, who open the mother's uterus, repair the opening on the fetus' back with a patch made from human skin, and then close the uterus.

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