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Fate and Faith

A groundbreaking surgery in utero to fight spina bifida

Faith Hagler FamilyColette and Ivan Hagler credit their daughter’s health to a combination of medical science and divine will – that is, groundbreaking in utero surgery and faith.

For them, nothing else could possibly explain it. In 2011, Colette Hagler was undergoing a routine sonogram at her doctor’s office in Dallas, during which the Haglers expected to find out the sex of their baby. The physician on call informed them they were having a girl, and then asked the Haglers to remain in the waiting room.

“I knew something was wrong,” Colette recalls, “because what else would they need to tell us?” Ivan tried to stay positive while they waited, but Colette’s anxiety wouldn’t go away.

Minutes later, the Haglers were called back into an examination room, where they learned that there was indeed something wrong. Their baby appeared to have a tumor, but the Haglers would need to see a specialist to find out for sure.

While waiting for their appointment with the specialist, Ivan remembered a TV program he’d seen recently, in which a doctor had performed fetal surgery in utero to remove a tumor. He’d been so fascinated by the show, he recorded it for Colette to watch. It didn’t occur to him then that in utero surgery was something he and his wife would ever need.

The specialist told them that what their obstetrician had seen on Colette’s sonogram wasn’t a tumor but a fluid-filled sac. The cause? Spina bifida.
Like most people, Ivan and Colette had heard of spina bifida but didn’t know anything about it. They promptly received a crash course in the disorder, learning that their fetus’ vertebrae hadn’t fully formed, leaving an opening that exposed the spinal cord. They also learned of the complications often caused by spina bifida, including leg paralysis, clubfoot, hip dislocations and scoliosis, as well as bladder and bowel dysfunction, and eye problems. Their baby also had an increased risk of being born with an impaired mental function.

Did you know?

Spina bifida occurs when the tube that covers the spinal cord fails to close just 28 days after conception.

Doctors do not know exactly why this condition occurs. It is thought a lack of folic acid before and during early pregnancy impairs the development of the spinal cord. The condition may also be partly genetic. Having one child with this disease makes it more likely that you will have another affected child. According to the Centers for Disease Control and Prevention, women considering pregnancy are recommended to take folic acid every day to help prevent it.

Traditionally, babies diagnosed with spina bifida are treated soon after birth to repair the opening in the spine. Additionally, shunts are usually surgically implanted to drain excess cerebrospinal fluid, and spina bifida patients often have to keep these shunts for life. The longer the spinal nerves are exposed, the more problems they cause, which is why in utero surgery might limit the effects of the condition.

Colette and Ivan were committed to continuing the pregnancy. As they listened to the maternal-fetal medicine specialist describe the issues their baby would potentially face, Ivan again remembered the TV program he’d seen, and asked about the possibility of fetal surgery.

The specialist told them he had a colleague in Houston who was participating in a trial involving fetal surgery for spina bifida.

The Haglers had to return to the specialist the following day for amniocentesis. When they arrived, the specialist had already spoken to the team at The Fetal Center at Children’s Memorial Hermann Hospital.

Colette and Ivan came to Houston for a two-day consultation with the doctors conducting the trial, fetal surgeon Dr. KuoJen Tsao, Associate Professor, Department of Pediatric Surgery at McGovern Medical School at UTHealth, and pediatric neurosurgeon Dr. Stephen Fletcher, Associate Professor, Division of Pediatric Neurosurgery at the Medical School. The couple was impressed by the care and patience with which the surgeons explained what in utero surgery on a 24-week-old fetus would involve. Throughout their consultations, they didn’t at all feel pressured to undergo the procedure. “It’s your decision,” Ivan told Colette.

“I couldn’t let my fear cripple me,” says Colette, who the very next week became the first person in Texas to undergo in utero surgery for spina bifida. Drs. Tsao and Fletcher used tiny medical instruments to repair the fetus’ spine, thus preventing further nerve damage and mitigating resulting effects.

Did you know?

All women of childbearing age should take a minimum of 400 mcg of folic acid every day.

Over the next eight weeks, Colette remained at the hospital to recover from surgery and prepare for delivery, while Ivan drove from Dallas to see her every Friday evening, heading back every Sunday. They wouldn’t have been able to endure the stress of their situation, they say, without the kind help of the Children’s Memorial Hermann Hospital staff, the support of their families, and prayer. The Haglers prayed for their baby’s safe delivery and health, of course, but Colette asked for something in addition – that the birth take place on a day when Ivan was in town. Her prayers were answered when baby Faith was born on the Fourth of July – right before Ivan had planned to make the long drive home.

Looking back, the Haglers believe the TV show that so captivated Ivan was a sort of sign preparing them for the diagnosis to come. Its message, they like to think, was don’t be afraid.

The Haglers have driven back and forth from Dallas many times in the three years since Faith was born, for such things as foot surgery or complications due to premature birth. Happily, Faith’s early surgical intervention kept her from needing a lifelong shunt. In fact, she has caught up to her peers developmentally and suffers virtually no residual complications from spina bifida, although her parents regularly bring her back to Children’s Memorial Hermann Hospital to have her brain fluid checked and ensure she remains healthy.

Dr. Fletcher calls Faith “the poster child of what we wish to achieve with the fetal spina bifida repair.” Dr. Tsao says Faith’s experience made the subsequent procedures possible and that the Haglers have been a helpful resource for other patients considering surgery.

Their daughter’s name will always remind them of the difficult decision they had to make before she was born. They chose the name Faith to honor their medical breakthrough and the granting of their prayers that things would work out just as well as they did.