New, less invasive, fetal surgery at Primary Children’s improves outcomes for babies with spina bifida

SALT LAKE CITY — Doctors at Intermountain Health Primary Children’s Hospital said a new, less invasive, fetal surgery procedure is helping treat spina bifida while babies are still in the womb — improving long-term outcomes for children and lowering risks for mothers.

Spina bifida is a congenital birth defect that occurs when a baby’s spinal column does not close completely early in pregnancy. It can lead to lifelong mobility challenges and, in some cases, serious complications involving the brain.

For nearly four years, specialists at the Grant Scott Bonham Fetal Center at Intermountain Primary Children’s have performed open fetal surgery to repair spina bifida. That method required a larger incision on the uterus.

Now, surgeons are using an innovative fetoscopic approach, which involves three small incisions.

“The difference is the way we approach the uterus,” said Dr. Stephen Fenton, a pediatric surgeon and director of the Grant Scott Bonham Fetal Center. “In the more original repair, not only was the mom opened, but the uterus had a big opening in it.”

Fenton said that could create long-term concerns for the mother.

“We’re talking high risk during the pregnancy of the repair,” he said. “And then every pregnancy afterwards would also be considered high-risk.”

Fenton said the fetoscopic method is less invasive and can reduce risks for mothers during their current pregnancy and future pregnancies.

“The difference is now we approach the uterus using little incisions,” he said. “And so the uterus remains relatively the same as any other uterus.”

Fenton said one of the major benefits is that a mother’s next pregnancy may not be considered high-risk.

“Mom could come, get fetoscopic repair, and now their next pregnancy is like a normal pregnancy,” he said.

The procedure can also improve outcomes for babies.

Fenton pointed to a major national study published in 2011 — known as the MOMS trial — which found children who received fetal repair before birth had better long-term outcomes than children who received surgery after birth.

One major difference was a reduction in the risk of fluid buildup in the brain, which can require a shunt.

“If you had it in utero, the risk would be decreased about 60%,” Fenton said.

Fenton said fetal repair can also improve a child’s long-term mobility.

“Some kids had an improvement in motor and sensory one or two levels from what the defect was,” he said. “That might mean that a child could walk with assistance where they wouldn’t be able to walk before — or would be able to walk without assistance where they needed assistance before.”

One of the families sharing their experience is the Vance family. Madison Vance’s daughter, JC, was diagnosed with spina bifida during her pregnancy.

Vance said the diagnosis came unexpectedly during a routine anatomy scan.

“We just went in for our normal 20-week anatomy scan,” Vance said. “I had 20 weeks of a normal pregnancy up to that point … and then it was all of a sudden not.”

Vance said her family underwent fetal surgery when she was 26 weeks pregnant.

“They went in laparoscopically, closed up that hole for her,” Vance said. “And then I delivered her at 34 weeks.”

Vance said the procedure does not eliminate spina bifida, but she believes it has improved her daughter’s chances at avoiding serious complications.

“It doesn’t get rid of the spina bifida,” Vance said. “She’ll always have it … it’s a part of us now. The surgery … just gives us better chances.”

She said one of her biggest hopes was avoiding the brain complications that can come with spina bifida.

“So far it has,” Vance said. “Her brain is beautiful … and that part of it is all we could ever ask for.”

Vance said the diagnosis was difficult to process, but she said she felt a sense of hope early on.

“I just had that gut feeling that like, she’s going to be okay,” Vance said. “Whatever happens … we’ll figure it out. And she’s ours and we’re hers and we’re a team.”

She also said she hopes other mothers going through similar news know their emotions are normal.

“Whatever they’re feeling is OK,” Vance said. “If they’re scared if they’re sad, if they’re mourning a loss of a normal pregnancy … it’s OK and all of your feelings are valid.”

Fenton said the team performed eight procedures last year and already has more scheduled.

“We’ll probably end up doing around 15 a year,” he said, noting that not all patients qualify.

Fenton said the hospital’s specialized team follows families not only during pregnancy, but through childhood.

“We’re here to give you hope,” he said. “We’re here to help … not just during pregnancy, but throughout their life.”

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