Pre-natal Surgery Offers Hope to Babies with Spina Bifida

by JANET ST. JAMES / WFAA.com

KENNEDALE, Texas — Two-month-old Kellen has eyes only for mommy, and not because she gladly put herself in mortal peril in order to give him the best chance at life.

When Claire Davis was 19 weeks pregnant, she and husband Justin Davis learned more than the gender of their third child.

"I could kind of sense that something was up, because the sonogram technician was taking a really long time, and this was not our first rodeo," Claire said. "I knew what to expect going in there, and it was not what I expected. Then it really was not what I expected."

"It" was spina bifida, the most common permanently disabling birth defect in the United States. About 1,500 babies are born with spina bifida annually, according to the Centers for Disease Control.

Taking folic acid before and during pregnancy has been shown to reduce the incidence of spina bifida, though no one knows for sure what causes the defect.

Even hearing the words "spina bifida" prompts shivers of fear in expectant mothers.

An MRI scan of baby Kellen shows the developmental defect at the bottom of his spine, which is open and exposed to amniotic fluid.

"We think that the damage is due to the spinal cord elements being exposed to the untrauterine amniotic fluid and also the baby moving around," explained Dr. Darrell Cass, a fetal surgeon at Texas Children's Hospital in Houston. "We think that that contributes to ongoing damage."

Common complications of spina bifida include paralysis and brain damage.

"All the potential complications that go along with spina bifida... I was definitely scared," Justin Davis said.

Then, the Davises learned about a hopeful — but dangerous — surgery possible in Houston, one that could correct the spine before the baby is ever born.

"Losing Kellen," Claire paused. "That would've been awful. But going into it, you try not to think of it too much."

In an operating room at Texas Children's Fetal Center, Claire Davis was put under a deep anesthetic.

Doctors then cut the uterus open, like a C-section, and manipulated the baby's exposed spine through the opening in the uterus. A surgeon operated on the baby through that tiny space, closing the spine, and tightly sealing the uterus shut.

"And then — very importantly — we have to close that uterus up, with stitches and keep it pregnant and keep the baby inside the uterus," Dr. Cass said. "And we have to have it so it doesn't leak that amniotic fluid and that the pregnancy can continue, and that's where this becomes very tricky and pretty difficult."

"So by closing these lesions, we're hoping to prevent ongoing injury, and hopefully preserve neurologic function," said Texas Children's OB/GYN Dr. Michael Belfort. "And even in some cases, we believe it's possible to regain some neurologic function."

Children born with spina bifida can have their spines enclosed just after birth. By then, the damage can already be serious.

Many children with spina bifida develop hydrocephalus, water that must be drained from the brain. That condition can cause complications, including serious infections.

The in-utero surgery is very risky, but could help children avoid the most serious complications of spina bifida.

An MRI taken post-surgery showed Kellen's spine was sealed and his brain was developing normally. He now has just a scar to show for the operation.

"He is perfect," his proud mother and father said. "He is wonderful."

Kellen does have two club feet, a common condition for spina bifida babies. Kellen's are being corrected with casts.

In fact, his little legs are so strong, he's already kicked his casts off once. It's an inconvenience that makes his parents smile, considering he could have been born paralyzed.

Now, his parents have hopes they will one day see Kellen running with his brother and sister.

"[I hope] that he be able to walk, run, play," Justin said. "Do everything he's supposed to do."