Baby Olivia and Family Prepared for Road Ahead following Fetoscopic Spina Bifida Repair

Lauron and Brady delight in watching their first baby, a girl named Olivia, squirm and wiggle in her bassinet in the Neonatal Intensive Care Unit at Ann & Robert H. Lurie Children’s Hospital of Chicago.

These first-time parents have faced many difficult decisions to get to this point.

In November, Lauron and Olivia were among the first patients at The Chicago Institute for Fetal Health at Lurie Children’s to undergo an innovative, in utero approach for repairing open spina bifida (OSB), the most severe form of spina bifida. This minimally invasive technique is designed to reduce the risks for the mother and the baby undergoing fetal surgery while preserving the option for a vaginal delivery. Babies with OSB closed before being born have been shown to have better long-term prognoses.

An unexpected diagnosis

Lauron was only 16 weeks pregnant when a blood test triggered the unexpected diagnosis of OSB, which occurs in about 1 in every 1,000 pregnancies. Babies with OSB often face many long-term disabilities, including possible leg paralysis, bowel/bladder control concerns, and hydrocephalus (extra fluid in the brain). Lauron’s maternal fetal medicine (MFM) physician, Dr. Kevin Madsen, consulted with the Director of The Chicago Institute, Dr. Aimen Shaaban, who is an expert in fetal intervention surgery, and set up an appointment.

After scouring the internet for information about spina bifida that mostly frightened the couple, they met with Dr. Robin Bowman, Director of Fetal Neurosurgery at the Institute and of Lurie Children’s Multidisciplinary Spina Bifida Center; and with the rest of the Institute team.

 “I already felt relief and comfort,” Lauron recalled. “And that is the trend I have experienced every time I interact with the Institute team. They helped educate me on the diagnosis and Olivia’s specific prognosis in a way that made us feel empowered rather than overwhelmed.”

Choosing the right path forward

Lauron said the Institute team put the decision in her and Brady’s hands to choose their path for treatment. Lauron could proceed with surgery after the baby was born or she could have in utero surgery through the standard open surgical method or with the new fetoscopic technique. The fetoscopic repair would make it more likely that Lauron, who wants more children, could avoid a cesarean section and deliver vaginally in subsequent pregnancies with a lower risk for complications.

Lauron and Brady said they trusted the Institute team and felt the fetoscopic option was right for them.

 “Being able to have that here where we live with The Chicago Institute for Fetal Health team is still truly a miracle to us,” Lauron said.

In the procedure, Drs. Bowman and Shaaban led the surgical team that operated on Lauron’s abdomen and exposed her uterus. Next, they made three tiny openings in the uterus that were approximately 1/8th of an inch in diameter. One opening allowed a small camera to be inserted into womb. Working through the two other openings, Drs. Bowman and Shaaban positioned the baby and surgically closed the open spinal defect. The small uterine openings and abdomen were then closed.

Lauron stayed in the hospital for four days after the operation, but then was able to go home and “enjoy the rest of my pregnancy,” she said.

At 34 weeks, Lauron’s water broke and she had a vaginal delivery for five-pound Olivia – “a chunky preemie,” as Lauron called her.

Since then, Lauron and Brady have been taking turns spending the night with their baby girl in the NICU, watching her grow and progress. An initial visit with a physical therapist found Olivia has strong muscle function in her legs, feet and toes.

Lauron knows the surgery gives Olivia the best chance at meeting milestones on time, though there is no guarantee. Still, when she looks at her beautiful baby girl, she knows one thing about the future: “It’s going to be OK, no matter what.”

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