Sarasota County family shares journey after pioneering in-womb spina bifida repair

After a routine 20-week ultrasound revealed their unborn son had spina bifida, Nokomis parents Lauren and Sean Hearn traveled to Texas Children's Hospital for a pioneering, five-hour in-womb surgery to give baby Theo a fighting chance at walking unaided. FOX 13's Kimberly Kuizon reports.

The Details

The Brief

A Nokomis couple learned at 20 weeks pregnant that their son, Theo, had spina bifida, prompting an urgent trip to Texas Children's Hospital for specialized fetal surgery.

Surgeons closed the open lesion on Theo's back while he was still in the womb, a five-hour procedure that doubles a child's chances of walking unaided.

Theo was born nearly two months ago and is now home in Sarasota County with his family, showing positive signs as his mother works to support other expectant parents.

NOKOMIS, Fla. — After a routine 20-week ultrasound revealed their unborn son had spina bifida, Nokomis parents Lauren and Sean Hearn traveled to Texas Children's Hospital for a pioneering, five-hour in-womb surgery to give baby Theo a fighting chance at walking unaided.

What we know

Lauren and Sean Hearn were preparing to welcome their second child, a baby boy named Theo, when a routine 20-week ultrasound delivered devastating news. Doctors discovered Theo had spina bifida, a condition where a baby's spine and spinal cord do not form properly, which can cause paralysis, brain swelling and bowel issues.

For Lauren Hearn, who has a background in the medical field and previously worked in a neurointensive care unit, reality hit immediately. "There was a part of me, of course, initially, I was shocked. I was devastated you think of your child being in a wheelchair and just all the things that he might face in his life, and it was really hard," Lauren Hearn said.

Sean Hearn echoed the fear of learning about his son's condition. "It was a pretty terrifying thing to hear that your 20-week-old son has an open lesion in his back and is leaking spinal fluid," Sean Hearn said.

Lauren Hearn's Sarasota obstetrician, Dr. Matsumoto, recommended the couple visit Texas Children's Hospital. Within that same week, the Hearns flew to Texas for testing and met with surgeons Dr. Michael Belfort and Dr. William Whitehead, who pioneered a fetoscopic surgery for the condition.

Belfort, who serves as chairman of the Department of Obstetrics and Gynecology at Baylor College of Medicine and obstetrician and gynecologist in chief at Texas Children's Hospital, explained the goal of intervening before birth. "If you operate on a baby before it’s born, you can actually prevent some of the damage. None of this is a cure, you’re not going to reverse whatever damage is there, but you can prevent and halve the number of kids that need a shunt and double the number of kids who walk unaided," Belfort said.

During the five-hour operation, doctors cut Lauren Hearn from hip to hip, lifted out her uterus and used ports to close Theo's spinal lesion while he remained in the womb. The specialized technique also preserves a mother's ability to have a natural birth.

Theo's recovery in Sarasota County

What we don't know

Lauren Hearn returned home to Florida and gave birth to Theo nearly two months ago. While it will still take time before doctors and parents know the exact long-term impacts of Theo's spina bifida, his family is already seeing encouraging progress at home alongside his 2-year-old sister, Olivia.

"We are really hopeful with the way Theo is presenting. He’s doing amazing, and he’s just completely blown us away with how well he’s doing. We are super blessed. We are grateful. We are very thankful for everything," Lauren Hearn said.

What they're saying

Throughout the whirlwind trip and operation, Sean Hearn said his wife's resilience stood out. "She was just like a beam of light. Just super excited and at the opportunity, she was nervous, but she was excited the opportunity to do what we could do to give our son the best quality of life. It was kind of inspirational to be honest," Sean Hearn said.

Lauren Hearn praised the anesthesia and maternal-fetal medicine teams in Texas, noting how far medical advancements have come over the past 25-plus years. "All of these individuals who are involved are paving the way for a better future for our children. They're just giving people opportunity, and we said that to all of our doctors, thank you for giving our child the opportunity because without you, we have no idea what his life would be like and even if the outcomes weren't what we necessarily wanted, the amount of care and presence that every single provider at Texas children gave us ,there’s no words," Lauren Hearn said.

She added that her gratitude for the surgical team will last a lifetime. "Truly, until the day that I die, I will be grateful to those people, every single one of them, just for being present with us, for caring, for trying. They don’t have a crystal ball. They can’t determine, they don’t know exactly how this will turn out, but they’re still willing to risk it all to better the future," Lauren Hearn said.

For Dr. Belfort, seeing the results of these fetal repairs remains deeply moving. "Every time I see a baby that had a spina bifida repair, the parents send me a video of them living a completely different life. It makes me want to cry. It is remarkable, and you never get used to that," Dr. Belfort said.

Supporting other spina bifida moms

What you can do

Lauren Hearn is emphasizing the importance of attending all scheduled prenatal appointments and ultrasounds, which allowed doctors to catch Theo's diagnosis early. She is now working to support other mothers navigating the uncertainty of a spina bifida diagnosis and offers to speak with them to help guide them through the process.

She is offering to be a resource to other mothers and can be reached at [email protected] "You will be tested mentally, physically and emotionally, and it will work out better than you could ever imagine and when you get to the other side, ironically, you will be grateful for all of it like every moment," Lauren Hearn said.

The Source

The information in this story was gathered from interviews conducted by FOX 13's Kimberly Kuizon with parents Lauren and Sean Hearn, as well as Dr. Michael Belfort of Texas Children's Hospital and Baylor College of Medicine.