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updated 2/9/2011 7:17:28 PM ET 2011-02-10T00:17:28

Pregnant women were afraid to have it. Doctors were afraid to do it. Hospitals stopped performing the surgery because the U.S. government wanted evidence it was safe and worth doing.

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Now, a landmark study shows that an operation to fix a hole in the spine while the fetus is still in the womb leads to better outcomes for children with spina bifida. The operation showed such a clear benefit over waiting until the infant is born that the study was stopped early.

"This is the first hope for spina bifida fetuses," said lead researcher Dr. Scott Adzick of Children's Hospital of Philadelphia, one of three places that participated in the study.

Story: Q&A: Prenatal surgery raises hopes, questions

Doctors started experimenting with fetal surgery for spina bifida in the mid-1990s, cutting into the mother's abdomen and uterus to close the gap in the spine. It even became part of the abortion debate when a photo of a tiny hand poking out of a womb during surgery was published.

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The government-funded study showed that babies who have the operation in the womb were more likely to walk without help and less likely to need a tube to drain fluid buildup in the brain. Fetal surgery did come with some risks, however, including a higher chance of being born premature and complications for the mother.

Spina bifida — which means split spine — happens when the spine doesn't develop properly. In the most severe cases, the spinal cord sticks out through an opening in the spine. Children often are paralyzed or have weakness below the waist and many need crutches or a wheelchair. They also suffer from incontinence and fluid buildup in the brain.

Cases in the U.S. have dropped to 1,500 a year since 1998, when the government ordered that foods like cereals, breads and pasta be fortified with folic acid, which reduces the risk of the spinal defect.

Though spina bifida is usually diagnosed before birth, the operation is typically done days after delivery. Quick surgery can prevent further harm but cannot reverse the nerve damage that has already occurred.

When fetal surgery for spina bifida was first tried, it was controversial because operations in the womb were typically done for life-threatening problems. There was also no long-term research on the safety of the surgery. The operation even got caught up in the abortion debate when abortion opponents seized on a photo taken during surgery on a 21-week-old fetus at Vanderbilt University.

By the end of 2002, more than 230 spina bifida operations had been done, but some doctors remained skeptical. So the National Institutes of Health launched a big study that year at Vanderbilt, the Philadelphia hospital and the University of California, San Francisco. Other hospitals agreed not to do the surgery while the research was under way.

The researchers, whose findings were published online Wednesday in the New England Journal of Medicine, studied 158 babies who had the surgery either in the womb or after delivery. The fetal surgery was done between 19 and 25 weeks of gestation.

By the time they turned a year old, 40 percent in the fetal surgery group needed a drainage tube, or shunt, in the brain, compared with 82 percent in the standard surgery group. The fetal surgery group scored higher on combined tests of mental development and motor skills at 2½ years, though there was no difference in cognitive function alone.

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Forty-two percent of the toddlers in the fetal surgery group could walk without crutches or other support versus 21 percent in the other group.

Two children died within days of the fetal surgery; two children who had the fix after birth and had shunts died later.

Eighty percent of those who had fetal surgery were born premature compared with 15 percent in the after-delivery group. On average, children who had surgery while still in the womb were born 1½ months early and had more breathing problems. A third of the mothers who had the operation had thinning in the wall of their uterus, a complication that requires cesarean delivery in the future.

"Not all the patients were helped here, and there are significant risks," said pediatric surgeon Dr. Diana Farmer of UC San Francisco. "So this procedure is not for everyone."

For safety reasons, the study did not include obese women, even though they have higher rates of fetuses with spina bifida.

Since fetal surgery is highly specialized, some experts said that the results may not be as good in hospitals with little experience and that more work is needed to better determine who will benefit most.

"Caution is necessary here," Dr. Joe Simpson of Florida International University and Dr. Michael Greene of Massachusetts General Hospital wrote in an editorial.

It was a grueling ordeal for many expectant mothers in the study. Many who had the fetal surgery needed to move near the surgery center in case they delivered early. The editorial writers noted that only 15 percent of those who expressed interest in the study chose to participate. Others were either ineligible or did not want to take the risk.

Seven years after fetal surgery, Evan Terrell of Nashville, Tennessee, is more active than his parents ever hoped. He swims, rides his bike and plays basketball with his friends. Soon after birth, Evan went through intensive physical therapy to strengthen his legs. He needed braces and inserts in his shoes to help him walk as a toddler, but no longer requires any assistance.

His mother, Kristie Terrell, who participated in the study at Vanderbilt and stayed in the hospital for a month, said she is thankful that he didn't need a shunt in his brain.

"He is a bouncing, hyper, beautiful boy," she said.

Vanderbilt performed the first fetal surgery for spina bifida in 1997 on Daniel Meyer, at 29 weeks. Today, the technique is done earlier in pregnancy.

Now 13, Daniel uses a wheelchair, but that doesn't stop him from going fishing and playing tennis and basketball, according to his mother, Cory Meyer.

Daniel had an operation last year to replace the brain tube put in after he was born. He also has some bladder problems but is otherwise healthy.

"I'm totally happy with the decision that we made" to have fetal surgery, said the boy's father, Scott Meyer. "I think it's helped out a lot of kids."

Copyright 2011 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Video: Study: Fetal surgery best for spine defect

  1. Transcript of: Study: Fetal surgery best for spine defect

    BRIAN WILLIAMS, anchor: Mentioned this earlier, we have news tonight about one of the most common birth defects , spina bifida , which occurs when an opening appears in the spinal cord of an unborn child. It can have, as you may know, serious consequences ranging from paralysis to mental disabilities, even death. But now researchers have found it's possible to repair the problem while the child is still in the womb, and that could change the lives of thousands of American families. Our report tonight from our chief science correspondent Robert Bazell .

    Mr. THOMAS GIOVANOLA: They see me.

    ROBERT BAZELL reporting: Three-year-old Thomas Giovanola is one of the success stories in the ground-breaking nine-year study of fetal surgery for the worst type of the common birth defect spina bifida . Like most couples, Heather and Brian found that their baby had the characteristic hole in his spine during an ultrasound.

    BRIAN: OK, we're going for this.

    BAZELL: Then they learned about an experimental surgery and were determined to get it.

    HEATHER: I was telling myself, 'All right, baby, we're going to get you this surgery. We're going to close your back and do as much as we can to help you walk as well as you can.'

    BAZELL: The study of 183 surgeries found that the operations in the womb left kids with 30 percent fewer problems than the standard treatment, surgery right after birth. The trial was totally randomized. The mothers had to agree that a computer would decide whether they would get the fetal surgery or the child would be operated on right after birth. Heather was chosen for the fetal surgery , where in a two-and-a-half hour operation doctors cut into the womb and fixed the fetus' spine, a very delicate procedure. Dr. DIANA FARMER ( University of California-San Francisco Benioff Children 's Hospital ): I thought it was important that we establish a bar for maternal safety and that we'd be absolutely certain that this was warranted, that the outcomes were good.

    BAZELL: They were. As for Thomas ...

    Mr. GIOVANOLA: I found a rattley.

    BAZELL: ...he still has trouble walking, but he does not need a shunt for cerebral spinal fluid and he is free of mental problems... What's this?

    Mr. GIOVANOLA: It's a -- it's an emergency helicopter.

    BAZELL: ...two common complications of the disorder.

    Dr. FARMER: It looks like it rubs right up against the uterine wall.

    BAZELL: And as doctors say, this could open a new era in fetal medicine for thousands of kids like Thomas and their families.

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