Hope’s Story: Fetal Surgery for Spina Bifida

During a routine 20-week ultrasound, Nyra and her husband Kyle received concerning news. Their obstetrician noticed signs that their unborn baby had bilateral clubbed feet, enlarged ventricles in the brain, a lemon-shaped head and a Chiari II malformation – all signs that their baby may have spina bifida. Without knowing exactly what was going on, they were referred to a Maternal Fetal Medicine specialist in Green Bay, Wisconsin, who confirmed that their child had the most severe type of spina bifida called myelomeningocele.

This birth defect occurs when the bones in a baby’s spinal column do not properly close, which allows the spinal cord to extend through the bones and attach to the skin, resulting in damage to the spinal cord. This type of spina bifida may cause complications with bowel and bladder dysfunction, loss of mobility, hydrocephalus, sleep-disordered breathing and, sometimes, learning disorders.

With a diagnosis like this, a wide range of emotions came flooding in for Nyra in Kyle – they experienced denial and grief but also hope that they would find some way to help their daughter.

Nyra and Kyle were given the option to undergo a new type of surgery being performed in-utero to fix the defect, at The Chicago Institute for Fetal Health. With no hesitation, they decided that they wanted to pursue this option if they were candidates. An immediate referral was made and before they knew it, Nyra and Kyle were travelling from Sheboygan, Wisconsin, to Chicago to meet their multidisciplinary team for the first time.

Despite feeling overwhelmed and at times scared, they also felt at ease because The Institute’s director Dr. Aimen Shaaban, fetal neurosurgeon Dr. Robin Bowman and the rest of the care team took the time to explain the diagnosis and help them understand all their options. After each team meeting, Nyra and Kyle left feeling like they were a priority.

The following month, in April, Nyra and her daughter underwent a minimally invasive, fetoscopic surgery to repair the spina bifida defect in utero. They were the fourth mom and fetus to have this surgery done at The Chicago Institute.

Nyra said, “we felt nervous to only be the fourth patients to undergo this surgery, but we knew we were in the best hands with Dr. Shaaban and Dr. Bowman. We trusted our team with our lives and if we had to do it again for our daughter, we absolutely would.”

The surgery was successful – the team was able to close the defect on their daughter’s back which would hopefully lead to a better prognosis in the long-term. Following the surgery, Nyra was admitted to Prentice Women’s Hospital for five nights to rest and recover. They remained in Chicago for four weeks until they were cleared by their care team to return home.

Nyra was able to carry her baby to term and on July 14th, their beautiful daughter Hope was born. Due to the size of Hope’s defect and the diagnosis of hydrocephalus, she remained in the NICU for 60 days after birth but was then able to go home to meet her brother and sister. Today she is doing amazing!

“Seeing how much the surgery has saved our sweet Hope has made this journey, and all the sacrifices Kyle and I had to make, so much more worth it. It was the hardest decision, but it was the best decision we could have made for our daughter and our family,” Nyra explains.

Because spina bifida is a complex birth defect, Hope has check-ups often with her care team near their home. Once a year, she will get to debut her progress to her amazing team at Lurie Children’s. Through this experience, Nyra and baby Hope were able to connect with the first mom and baby to undergo the fetoscopic repair at The Chicago Institute, Mal and Max. Their friendship continues to this day. 

To families experiencing a similar diagnosis, Nyra says, “There is hope. The Chicago Institute for Fetal Health helped Kyle and I find peace in our daughter’s diagnosis. What felt like so much chaos and uncertainty in our life simply disappeared and that’s when we found hope.” 

Through the Families & Friends program at Lurie Children’s, Nyra and Kyle will be hosting a golf outing, in Wisconsin, in which all proceeds will go to The Chicago Institute for Fetal Health so they can continue to make ground breaking medical discoveries and help future families just like them! To learn more, visit this link.