Nearly 11 years ago, Anna Williamson's parents took a perilous risk when they elected to have a neurological impairment on her back mended in an experimental surgery before she was born.
As Anna plays basketball and scores A's on her report card, the Williamsons have long believed they made a life-enhancing choice.
Now a study confirms the pioneering Holly Springs family was right.
The research, released this month in the New England Journal of Medicine, demonstrates that operating on a fetus in the womb can reduce brain swelling and paralysis for children like Anna who are diagnosed with spina bifida.
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As a result, the procedure may soon be more widely available, including at UNC Hospitals.
"It's a very big deal," said Dr. Nancy Chescheir, a professor of obstetrics and gynecology at UNC-Chapel Hill School of Medicine, who was among the first to begin performing the procedure in 2000.
Chescheir was a member of the surgical team that operated on Anna Williamson. The youngster's parents, Jason and Susan Williamson, elected to undergo the fetal surgery when it was still radical.
The Williamsons' story, "A Chance for Anna," was chronicled in October 2000 in The News & Observer.
Spina bifida is a leading cause of paralysis and has no cures and few effective interventions - until the fetal surgery was tried.
Risks and advantages
The operation requires a risky incision through the mother's uterus to the developing fetus. Doctors then repair the spinal lesion on the fetus, which is sometimes an open wound, and other times a bulging cyst.
By intervening before birth, researchers had hoped the brain and spinal column could then develop more normally and reduce problems.
The trial, analyzing 158 pregnant women, bears out those hopes.
The mothers were randomly assigned to either undergo the fetal surgery, or get traditional therapy that mends the baby's lesion after birth. Among the children who had prenatal surgery, 42 percent could walk without braces or crutches, compared to 21 percent of those who did not get the intervention.
In addition, far fewer of the surgical patients needed a shunt to drain brain fluid - a major complication of spina bifida that can lead to infections, additional surgeries, and declining mental abilities. Of the prenatal surgery group, 40 percent required a shunt, compared to 82 percent of those getting traditional care.
The study's encouraging results were foretold by Anna Williamson's experience. Now 10, the fourth-grader at Cary Christian School shows little evidence of having spina bifida, except for a slight hitch as she walks.
She loves sports - "She's just begging me every day to go play golf," says her dad, Jason - and also excels at art, sewing and handcrafts. A curious explorer, her favorite subjects are science and history.
"It's easy to forget she has a disability," Susan Williamson said.
Yet a decade ago, when the Williamsons opted to have the surgery, there were only about 100 other cases to help guide their decision.
"We were doing what we thought was right for Anna and our family," Susan Williamson said, adding that she was heartened by success stories but yearned for scientific data that would have made the decision easier.
Now, she said, the trial's confirmation that the surgery offers benefit provides clarity for new parents facing the same dilemma.
"It gives people hope, and I'm thankful for that," she said. "That is such a huge thing."
Still, the surgery remains dangerous. It often triggers premature births - Anna was born five weeks early - and the moms face complicated subsequent pregnancies. Susan Williamson's second child, Patrick, was also five weeks premature, although her two youngest children arrived with few complications. Only Anna has spina bifida.
Will insurers balk at cost?
The surgery is also expensive, and Chescheir said she's not sure whether or when insurance companies will routinely cover it, despite the study's findings that it improves the health of many children.
She said UNC Hospitals is working through those issues as it considers offering the surgery.
"We hope to begin this year," she said.
Chescheir, who trained at Vanderbilt University where the Williamsons had their surgery, performed 10 of the procedures before the research trial was launched in 2003. She and colleagues hoped to be included as a trial site, along with Vanderbilt, Children's Hospital of Philadelphia and the University of California, San Francisco.
UNC lost that bid, but Chescheir worked on the study in other capacities. Meanwhile, UNC and all other hospitals in the country agreed to forgo offering the surgery so they wouldn't draw potential participants from the study and slow its pace.
Now, Chescheir said, she's eager to begin again.
"We have the most experience outside of the three trial sites," Chescheir said. "It's pretty exciting."