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“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, Tenn., 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.”

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Online:

Journal: http://www.nejm.org