ORLANDO, Fla. — In Central Florida, there is a surgery team that performs an extremely delicate procedure with the goal of reversing the birth defect spina bifida before the baby is even born.

  • Open-fetus spina bifida procedure aims to reverse the birth defect
  • Procedure is performed at Winnie Palmer Hospital for Women & Babies
  • The baby remains connected to the placenta during the procedure

The procedure is a combined effort of different specialties offering open-fetus spina bifida repair. The first one was performed on a mother and baby one year ago.

Akosua Taylor remembers going to a doctor’s appointment at the 20-week mark for an ultrasound anatomy scan. At the time, she was expecting to learn if she was having a boy or girl.

But Taylor knew something wasn't right when the ultrasound tech got quiet.

"Eventually she said, ‘Okay well, I have to be honest with you. Something's wrong with the baby. There's something wrong with her head, with her feet and with her spine,’" Taylor recalled.

The specialist later said her baby has spina bifida, a major birth defect of a person’s spine. The Centers for Disease Control and Prevention says 1,600 babies in the U.S. are born with it each year.

"I was scared. I was confused. My first question was, ‘Well, what did I do wrong? What did I do to cause this," Taylor said.

Taylor went over her options, talked to another parent who has a child with spina bifida, and learned about Winnie Palmer Hospital for Women & Babies. It's the first location in the state where doctors are doing an in-utero spina bifida repair procedure.

The surgery team, with pediatric neurosurgery director Dr. Samer Elbabaa, completes this extremely delicate task. The uterus is opened, similar to a C-Section.

"… the baby remains connected to the placenta through the umbilical cord throughout the procedure, while we perform repair of the nerves and spinal cord and close up the defect." Elbabaa explained.

The baby is then put back in, and mom is monitored carefully until delivery.

"This is very remarkable when you see the babies born with the best outcome possible," Elbabaa added. "Obviously this is not a standard of care, as we speak. There's a potential that this would be a standard of care in the future based on the scientific evidence."

"The surgery is definitely not a cure for spina bifida, but I believe that it (is). I mean, if you look at her, it's helped her a lot,” Taylor said.

For little Celeste, learning to walk is even more of a step-by-step process, but she's getting it, and her mom says spina bifida is not going to get her down.

"There are lots of amazing kids and adults that have spina bifida, and that (doesn't) let it define them, and Celeste won't let it define her either," Taylor said.

So far, the hospital's surgery team has done 11 successful procedures of this kind on 11 fetuses. Nine have been born healthy.