Determined to have a healthy pregnancy, Kylie Mattioda did everything in her power to prioritize her baby’s well-being. She was alarmed, to say the least, when a 22-week ultrasound scan came back with unexpected results.
Kylie’s doctor diagnosed her baby with hydrocephalus, a condition in which the primary characteristic is excessive accumulation of fluid in the brain. This accumulation results in the abnormal dilation of the brain ventricles, which can put harmful pressure on brain tissue and result in brain damage if left untreated.
After Kylie was referred to another medical center, she and her husband Luke received more news: The baby had developed spina bifida, a birth defect that occurs when the spine and spinal cord fail to form properly, a common diagnosis for infants with hydrocephalus.
“While this news was new territory for us, we were bound and determined to do everything in our power to create the best future for our little baby, whatever that may be,” said Kylie.
It was at this point that Kylie took matters into her own hands to find the right treatment for her unborn child. “I emailed Tadanori Tomita, MD, head of the Division of Neurosurgery at Lurie Children’s, because I’d read he was part of the Hydrocephalus Association. It was a Saturday morning, and he emailed me back instantly.”
Dr. Tomita told Kylie about The Chicago Institute for Fetal Health at Lurie Children’s, the only fetal center in Illinois that treats myelomeningocele in utero. Kylie and her husband immediately scheduled a meeting 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. During the meeting they also met with Mary Kamvisis, MSN, RNC-NIC, manager and nurse coordinator of the institute, and Bridget Doyle, MSW, LCSW. Kylie underwent additional testing including a fetal MRI, an echocardiogram, an ultrasound and amniocentesis, and then met with the team again to develop a care plan.
Kylie only had four weeks from the time of her baby’s diagnosis to decide whether or not she would undergo the procedure. Equipped with the depth of knowledge Dr. Shaaban had imparted, Kylie said the decision was easy. “I knew as soon as I met Dr. Shaaban that he was going to do an amazing thing for us,” she said. “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. She 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.
Mila continues to see specialists at Lurie Children’s, including Dr. Bowman, who was there from the first meeting, as well as her orthopedic surgeon and urologist. At their first Spina Bifida Clinic appointment, Kylie and her husband received the best news yet: their daughter is expected to walk before age two.
“When they said she would walk at our first outpatient clinic appointment, I said, ‘This is the first time anyone has said that to me, and I’m sorry that I’m crying!’ Before that, I never wanted to ask. I was always scared to know the answer. But that was simply amazing to hear.”
Today, the Mattiodas enjoy having Mila home with their son, Gianluca, and are thrilled to watch her grow and meet her key milestones. “She’s doing fabulous,” Kylie said. “She’s just a happy baby with a few extra appointments, which in the grand scheme of life is no big deal.”