Study shows children with Spina Bifida fare better with in utero surgery
Editor’s note. Not so long ago there was a fair amount of skepticism whether in utero surgery was, on the whole, a good idea for babies diagnosed with spina bifida. As we talk about in “First baby in France to have spina bifida repaired in utero, Mother and child doing well,” such surgery is still rare in Europe. However, the following story, which ran in 2011, is about a very important New England Journal of Medicine study documenting that babies did better with in utero surgery instead of trying to repair the damage after birth.
Over the last few months we have run several stories about in utero surgery. To this day there remain some skeptics. Their numbers are diminishing, however. Much research is demonstrating (for example) how babies with spina bifida will benefit when surgeons correct their problem before they are born.
One of the best examples was a study in the New England Journal of Medicine. “ABC News Tonight” did a wonderful job putting a human face on the study and showing the benefits of that surgery.
A smiling news anchor Diane Sawyer began
“We have medical news now. the result of a surgical experiment so promising, so profound the limits were lifted on the experiment so everyone could benefit.”
“It involves surgery in the womb with tiny instruments, microscopic skill and dexterity on a devastating birth defect that affects 1,500 newborns every year. And Deborah Roberts reports on the news tonight that could lead to other life-changing surgery for babies before they are born.”
I was aware that fetal surgery has been going on for a long time, particularly in cases of spina bifida, and that there were concerns that it might pose risks to unborn child and mother.
Spina bifida happens when the spine of the baby fails to close during the first few months of pregnancy. It can be associated with brain and nerve damage, including paralysis. Typically, prompt surgery after birth can prevent further harm but it cannot reverse the nerve damage that has already taken place.
“By the end of 2002, more than 230 spina bifida operations had been done, but some doctors remained skeptical,” is the way the Associated Press (AP) described the situation. “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.”
Half of 158 babies had surgery in utero (between 19 and 25 weeks) and half after delivery, according to the study that appeared in 2011 in the New England Journal of Medicine.
“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,” according to the AP. “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.” In addition, “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.”
Furthermore, they found that after one year, those who had surgery before birth were less likely to need follow-up surgeries than did infants who had surgery after birth–30 percent less likely.
Dr. Scott Adzick, chief of surgery at Children’s Hospital of Philadelphia, was first author of the study. “This is a big breakthrough,” he told ABC News’ Lara Salahi. “For the first time we can show a clear cut benefit, treating a non life threatening malformation by repairing it before birth.”
One of the children featured on the broadcast who had previously undergone in utero surgery was Sean Mulligan. Now 10, Sean walks without the help of crutches or a wheelchair.
“That’s the gratifying thing,” said Adzick, who was Sean’s surgeon.”Not statistics and all that sort of stuff, but seeing the impact of that operation on that kid.”
“I don’t think it gets better than that.”