Pregnant women were afraid to have it. Doctors were afraid to do it. Hospitals stopped performing the surgery because the government wanted evidence it was safe and worth doing.
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.
7-year-old Brett Hallman of Pennsburg, Pennsylvania lights up as Dr. Scott Adzick walks into the waiting room at Children's Hospital, and makes note of his Phillies shirt.
"Oh my god," says Dr. Adzick, of Children's Hospital. "A Phillies fan?"Brett isn't just a fan of the Phillies, but a ball player himself.
Before he was born, Tara and Jake Hallman doubted their son would be able to do that.
About 20 weeks into her pregnancy, Tara learned that tests showed Brett had spina bifida.
Dr. Adzick explains, "The lower part of the spinal cord is exposed."
He says that leads to serious problems after birth, such as paralysis in the leg, incontinence, and hydrocephalus - a buildup of fluid on the brain - which can hurt a child's development.
Instead of waiting till Brett was born to do surgery to cover the spinal column, Dr. Adzick operated before birth.
The procedure takes a lot of skill, and raises the risk of triggering a premature birth.
Now, however, a 7-year study shows fetal surgery for spina bifida is worth the risks.
"The fetuses who underwent the fetal surgery did better than those who were treated after birth," says Dr. Adzick. 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.
"As a kid, you want to be able to run around and play, and walk, and not be wheelchair-bound," says Dr. Adzick.
And Brett is VERY active, playing baseball, doing karate, and dancing -
"Pretty much, i'll do it anywhere," he says with bright eyes and a smile.
His mother Tara notes, "Even in my best case scenario, i didn't imagine he could be doing this well."
Cases of spina bifida 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.
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 in the womb.
The researchers, whose findings were published online in the New England Journal of Medicine, studied 183 babies who had the surgery either in the womb or after delivery. The fetal surgery was done between 19 and 25 weeks of gestation.
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.
"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.
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.
