SAN ANTONIO - Jennifer Sauceda feels compelled to share her story. Her daughter's story. Their story.
On March 27, 2018, Jennifer and her now 8-month-old daughter, Elysia, underwent surgery together.
Their two lives were on the line in one operating room.
Their story began during a routine ultrasound during the second trimester of Sauceda's pregnancy.
"They were going through the anatomy scan, and when she started reaching her head, she just kind of stopped and said, 'Oh no, this looks like spina bifida," Sauceda recalled. "And I said, 'what?!'"
That would be the first in a long line of questions Sauceda began asking.
"She explained to me there's the potential of her not having movement in her feet, her toes and her legs. She might have bowel movement issues," Sauceda said.
During a whirlwind of information and worry that flooded the expectant mother, doctors told Sauceda about maternal-fetal surgery offered at Children's Memorial Hermann Hospital in Houston.
During the procedure, surgeons perform a caesarean section on pregnant women to pull the baby from the womb. Then, they perform surgery on the baby to try to correct the defect and, finally, place the baby back into the mother's womb.
"At first he was like, 'Think about it,'" Sauceda said, remembering the advice from her doctor. "And I was like, 'No, I don't want to think about it. We need to do this.'"
After numerous consultations with her medical team, Sauceda and baby Elysia underwent maternal-fetal surgery at 25 weeks gestation to close the opening along Elysia's spine.
"The outcomes are tremendous," said Stephen Fletcher, D.O., a pediatric neurosurgeon at Children's Memorial Hermann Hospital in Houston and an associate professor at UTHealth's McGovern Medical School.
Fletcher performed the surgery on Sauceda and Elysia.
"The pioneers of this operation found that if they operated on babies in the womb, there's a lot of physiological and dynamic changes that occur that will actually reverse some of these bad problems," he said.
Fletcher has been performing the procedure since 2010, though he was skeptical at first.
"I almost had T-shirts and hats printed up opposing it, but I didn't go quite that far," he joked.
But time and results changed Fletcher's mind.
"I'm convinced, and here about 80 some odd cases later, I'm a firm believer and a big advocate that, for selective patients, this is a way to move forward," he said.
Fletcher has seen spina bifida patients who have undergone the surgery go on to live what he calls "normal" lives.
"What I mean by 'normal' is they don't have to have a catheterization every four to six hours," he said. "That's a huge deal for a patient. I never thought I'd see that."
But the surgery does have risks.
It is rare for a patient born with spina bifida to die in utero from the disease. Fetal death during the operation is a concern, Fletcher said. Other risks include rupturing of the uterus and premature delivery.
Sauceda had to be on bed rest for the remaining 12 weeks of her pregnancy.
Elysia was born on Sauceda's scheduled C-section date at 37 weeks.
Despite the surgery, Elysia was born with hydrocephalus, which causes fluid buildup in her brain.
Elysia had brain surgery at one-month old to place a shunt in her head, which allows the fluid to drain properly.
Fletcher said he and his surgical team hoped that wouldn't be the case for Elysia, and that the outcome of the surgery will be evaluated as Elysia grows and develops.
Doctors have never used the word "success" to describe the surgery, Sauceda acknowledges.
But Sauceda knows what she sees: her healthy, 8-month-old baby girl living with few symptoms of spina bifida.
Sauceda said Elysia's specialists, whom she sees every few months, have said that she won't likely need a wheelchair or crutches.
"I've heard a lot of people tell me, you know, 'They didn't offer you abortion?' It threw me off," she said. "I was like, 'No, my kid is perfectly fine!' Had I done that, I would have regretted that."
Time will be the ultimate judge of how successful Elysia's surgery was.
Sauceda is grateful she had that option.
"Have faith and have hope. Yes, doctors are going to tell you scary things but doctors aren't always right," Sauceda said, when asked what she would tell other expecting parents who receive the same diagnosis her daughter did.
"You have to really trust in our God. It comes down to my faith base, really. And when you say I have a big smile on my face? I do, I really do," she said. "Because I'm blessed."
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