Less Invasive Approach to Fetal Spina Bifida Repair

Julia Wallace vividly remembers the moment a routine ultrasound revealed her unborn daughter had myelomeningocele, a type of spina bifida.

“The whole room was devoid of noise, and the world stopped, just like people always say,” she said.

But timing, it turned out, was on her side. Her baby was one of the first ever to benefit from a pioneering experimental fetal surgery procedure to treat this serious birth defect – one that is performed only at Texas Children’s Fetal Center. Now, Nell Eloise, or Ouisie for short, is a healthy toddler.

“I remember thinking, ‘It’s not fair. Why my baby?’” Julia said. “But I’m the type of person who has a pity party for one night then wakes up and makes a plan.”

The plan was to travel from Baton Rouge, Louisiana, to Texas Children’s Hospital to meet the only team in the nation doing this type of surgery. Julia felt better as soon as she made the appointment.

At 22 weeks gestation, Michael Belfort, MD, PhD, OB/GYN-in-chief, and William Whitehead, MD, pediatric neurosurgeon, worked in tandem to perform a groundbreaking minimally invasive fetal surgery to repair Ouisie’s birth defect.

First they made an abdominal incision to expose the uterus. Then they lifted the uterus so it was outside the abdomen, removed the amniotic fluid and replaced it with carbon dioxide gas. They put ports into the uterus; inserted scopes and instruments through them; and performed endoscopic, or keyhole, surgery to repair the defect in the fetus’ lower spine. They dissected the membrane attached to the exposed spinal cord and then sutured the remaining skin together to cover the spina bifida defect to protect it from further exposure to the amniotic fluid. The amniotic fluid was returned; then the uterus was returned to the abdomen; the abdominal incision was closed; and gestation resumed normally.

Ouisie was born at almost 37 weeks with a normal vaginal delivery. She did develop hydrocephalus and coronal synostosis, which were treated surgically at 9 months, and her bladder function will be closely monitored, since many children with spina bifida require catheterization. But overall, she is healthy, and she is expected to walk normally.

“Eloise is doing extremely well,” Dr. Whitehead said.

“The experimental nature of the procedure means that it’s currently only performed on the most serious cases, those most likely to have severe debilitation,” added Dr. Belfort. “So for this baby, who had very limited options, to have this kind of outcome and be expected to walk normally and develop typically, it’s monumental. It’s a major turning point, and we’re extremely excited about it.”

Julia says she sometimes stares at Ouisie and realizes she truly is a miracle. She can crawl, pull herself up and bear weight on her feet, and she is verbal and incredibly social.

“Ouisie has stolen everyone’s heart,” Julia said. “She’s defied all odds and our expectations – and she’s changed a lot of people’s lives.”