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Spina bifida surgery before birth giving families hope

Posted at 4:21 PM, Oct 26, 2023

Choosing to have children is always a step into the unknown. The unknown for Alisha Staten…a condition called spina bifida. She never expected it, but you’ll see she rose to the challenge it presented.

“Yeah, you're doing great. Are you stuck? You're stuck. Do you need help?”

Staten is walking the tightrope so many parents know…trying to do adult stuff, in this case a TV interview, while watching her two-year-old Abigail.

“We had a relatively typical pregnancy up until about 18 weeks,” said Staten.

That’s when she had the ultrasound where most of us find out if we’re having a girl or a boy. Alisha Staten learned something might be wrong…and she drove from Victor Idaho to Salt Lake City.

“And on March 5, 2021, at 5:05pm, we got the news that she had spina bifida. And it changed everything,” said Staten.

Spina bifida is the most common neurological fetal abnormality, commonly called a birth defect. It involves the spinal cord, brain, and skin.

Robert Bollow is a pediatric neurosurgeon at Primary Children’s Hospital. He said spina bifida occurs, “Very early in pregnancy, when an embryo is becoming a fetus, if they (skin and nervous system) don't separate normally, then you get exposed spinal cord.”

The question for Alisha was how she could help her child be as healthy as possible.

“We thankfully qualified for the fetal surgery repair. And that's what we opted to do,” she said.

Dr. Bollow said, “not everybody’s a candidate, but many, many women are, and it significantly decreases the risk of what we call a shunt or hydrocephalus, which is the inability to manage that spinal fluid.”

Imagine spinal fluid like the moisture in a pressure cooker. With spina bifida, the pressure cooker doesn’t develop a safety valve for the steam.

Fetal surgery can jump start the body to develop that safety valve, so the child doesn’t need an artificial drain, called a shunt.

“I think we've found over time that there's a lot of chronic conditions that patients are born with and if we can intervene earlier or modulate the way the nervous system works as it's developing, we can improve the long-term outcome and decrease disability significantly,” said Dr. Bollow.

Alisha and Abigail were two of the first patients with the procedure at Primary Children’s Grant Scott Bonham Fetal Center.

“If the fetal surgery center wasn’t here, we wouldn’t have been able to get care as close to home. We would have had to go to Colorado, California, Philadelphia, Texas,” said Staten.

“I would say what we do is a sacred trust right to convince and families that what their child or their fetus needs is for us to go in and operate on them very young and very early, the most important thing in their whole world,” said Dr. Bollow.

Abigail clearly holds that place in her mother’s heart.

“She's smart. She's kind. She's compassionate. She's sassy. Very sassy. And she's just eager. She is so eager to do things her way. Nobody's telling her what to do,” said Staten.

And Abigail is doing a lot that could have been impossible. And victories only happen in the face of a challenge it’s a tough road.

“Sometimes I frickin hate the journey. I'm not gonna lie. Yeah, it's hard. It's a hard one. And you look back and you're like, you still can't answer those questions of why, why? Why all of this. But then you look over at her and you know that that's why she's why. Regardless of what it looks like, she's why. And as long as I can show her what strength looks like, and what perseverance looks like. She's going to be able to overcome anything and everything that she faces in her journey. I just know. I just know it,” said Staten.