Families with children born with spinal cord defect hopeful after unique surgery in Houston

HOUSTON, Texas (KTRK) -- An FDA study at UTHealth is helping children with spina bifida live to their best potential, and it comes on its national day, recognized on Oct. 25, which raises awareness of the birth defect.

"So the pregnancy actually started very easy," said Dr. Morgan Knight, a new mom to 3-month-old Evelyn, who has spina bifida.

Knight is an OB-GYN and gave herself her own ultrasound early in her pregnancy.

"I was at the hospital, and I just was doing an ultrasound to look in on her," Knight told ABC13.

What Dr. Knight noticed concerned her, but she thought perhaps she wasn't seeing what she thought.

"I saw just that there was like a little kind of little bubble over the base of her spine, and I was like, 'Oh, I've been awake for 24 hours. I'm just gonna like rest for a minute and come back and see if I still think the same thing,'" Knight said.

Knight's own OB-GYN later confirmed that her baby had spina bifida.

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It's a defect that impacts a child's spinal cord. With this defect, the skin doesn't completely close over the spinal cord, causing children to be unable to use their arms and legs.

Spina bifida impacts roughly 1,500 children in the United States each year. That's why researchers at UTHealth are pioneering new ways to give these children a better quality of life.

When a baby is diagnosed with spina bifida, a team of neurosurgeons is brought in to discuss options with families.

Traditionally, surgeons have used an open fetal surgery to fix the exposed spinal cord and nerves around the 24-week mark while the child is still in utero. They do that by getting a little patch of skin from another part of the body and covering the exposed spine.

"We would open the mom up, expose the pregnant uterus, and then make an incision. Probably, I would say five or six inches, and we remove the baby and fix the back, and then put our baby back in, sew up the uterus," Dr. Kuojen Tsao, a pediatric surgeon at UTHealth and Children's Memorial Hermann Hospital, said.

Open fetal surgery requires a longer recovery time for the mother and forces her to have a cesarean section when it is time to deliver.

But at UTHealth, surgeons are using a surgical method that requires three small holes in the mother's abdomen, meaning less recovery time.

"We put three tubes inside the uterus. In through one of these, it has a TV camera, and then the other two tubes, or what we call ports, are used for instruments that we use to repair the defect," said Dr. Stephen Fletcher, a neurosurgeon at UTHealth, who has been performing spina bifida repair surgeries for more than four decades.

It's called a fetoscopic surgery and takes place between 24 to 26 weeks of gestation. Doctors say one of the major benefits is the reduced risk of trauma to the fetus and mother, which can lead to premature delivery. Dr. Fletcher has performed roughly three dozen fetoscopic procedures.

The surgery is part of an FDA study that's looking at data from patients with spina bifida, aiming at changing their quality of life as children. Doctors say they hope that the data that's gathered over the next five to 10 years will create better results from surgeries in the future.

"What we are doing in the study is finding out that we can close the defect effectively, and also have a good long-term outcome for the baby," Dr. Ramesha Papanna, the head of the study and a professor at UTHealth, said.

For little Evelyn, the surgery was life-changing. She is now 3 months old.

"I think it's incredibly surreal. I mean, as you can look at it right now, moving all over extremities, waving our hands at you, smiling and just, super excited," Richard Knight, Evelyn's dad, said.

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