‘This procedure has completely changed my life’: Five years later, mom reflects on fetal surgery

This July, The Chicago Institute for Fetal Health at Lurie Children’s, a regional leader in integrated care for pregnant women with fetal complications, celebrates its fifth anniversary. Since its inception in 2017, The Chicago Institute has completed including fetoscopic spina bifida repair, a minimally invasive technique that may reduce risks for the mother and the baby while preserving the option for a vaginal delivery. 

In 2017, Kylie Mattioda was the first patient to undergo fetal surgery to repair spina bifida at the institute. While 22 weeks pregnant with her second child, Kylie discovered her baby had hydrocephalus, or fluid on the brain that can lead to brain damage, and spina bifida, a birth defect that occurs when the spine and spinal cord fail to form properly. Left uncorrected, spina bifida can prohibit the ability to walk and grow.

Kylie and her husband Luke soon met with Aimen Shaaban, MD, director of the institute, and Robin Bowman, MD, a neurosurgeon, who is the director of the Multidisciplinary Spina Bifida Center at Lurie Children’s and a member of the institute’s team. 

“Right away, we felt a connection with the team and knew they truly cared about us,” Kylie said. “I knew as soon as I met Dr. Shaaban that he was going to do an amazing thing for us. It was such an emotional time with so many unknowns, but I was at peace as soon as he walked in. He gave us all the objective facts so we could make an informed decision for ourselves about how we should proceed, whether that meant opting for the surgery or not. He made it very easy for us.”

The procedure involved a vertical incision across Kylie’s abdomen so the uterus could be exposed. Dr. Shaaban then made a small cut in the uterus to create a window to the baby’s back. Dr. Bowman surgically closed the myelomeningocele defect on the baby’s back, and the uterus and abdomen were stitched up and closed.

Two weeks later, Kylie went into labor and gave birth to her daughter Mila on November 6, 2017. Since Mila was premature, she spent four months in the neonatal intensive care unit at Lurie Children’s before going home. 

To the amazement of her parents, Mila began walking before age two. Now four-and-a-half, Mila continues to meet key developmental milestones and physical therapy goals. She moves without assistance for short distances, and begun playing adaptive sports, including wheelchair basketball. She continues to follow up with her team of experts at Lurie Children’s Spina Bifida Multi-Disciplinary Clinic, one of the largest programs of its kind in the world. 

“We were at a family wedding this summer and Mila was on the dance floor with her brother,” Kylie said. “There was a giant circle of people around them, and everyone was so happy to see them dancing. Without fetal surgery, she wouldn’t be able to do that.”

Since 2017, the institute has continued steadily expanding, pioneering research to further enhance therapies and treatments for conditions such as congenital diaphragmatic hernia, fetal lung lesions and congenital heart defects. 

“Through the institute and social media, I’ve gotten to personally talk to several parents who are considering this procedure,” Kylie said. “It’s a humbling experience to share my experience with moms and dads in the position we were once in. Everything about this procedure has completely changed my life and made me appreciate everything our daughter is able to achieve.” 

Watch Mila’s story

About the Chicago Institute for Fetal Health 

The Chicago Institute for Fetal Health is a regional leader in the research and care of pregnant women with fetal complications. As one of only a few comprehensive fetal centers in the country, the institute is able to offer pre-birth counseling and care, as well as corrective fetal intervention if needed, including both twin to twin transfusion syndrome (TTTS) laser treatments and spina bifida (myelomeningocele – MMC) repair in utero, among others.

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