About Our Patient Champion

In early 2019, Amy and Ron were ready to welcome the challenges and joys of becoming first-time parents. No amount of preparation could’ve braced them for the news they received at an ultrasound at 19 weeks when their baby was diagnosed with spina bifida, a birth defect that occurs when the spine and spinal cord fail to form properly. Their first child, a baby boy, was diagnosed with the most severe form of spina bifida, myelomeningocele (MMC).

Commonly associated with spina bifida, their baby was also diagnosed with Arnold Chiari Malformation Type II, a condition that causes the brain tissue to extend into the spinal canal, and also with hydrocephalus, a buildup of fluid in the ventricles of the brain. Ron and Amy were informed by a maternal fetal medicine specialist that spina bifida may impact their baby’s ability to walk, and may affect bowel and bladder function, amongst other long-term implications.

Determined to find solutions for their child, Amy and Ron met with Dr. Aimen Shaaban, Director of the Chicago Institute for Fetal Health (CIFH), and his team at Lurie Children’s. Together, the parents-to-be and their new medical team discussed open fetal surgery performed by Dr. Shaaban that closes the defect on the baby’s back in-utero. In many cases, these babies have better long-term prognoses. Without any hesitation, Amy and Ron made the decision to proceed with the surgery. In March 2019, Amy underwent the procedure at 25 weeks pregnant. The surgery went as smoothly as possible, and after spending about a week in the hospital, Amy was able to head back home on strict bedrest.

In May 2019, Dylan arrived at 32 weeks, and spent the first two months of his life in the Neonatal Intensive Care Unit at Lurie Children’s to work through typical preemie-related issues such as feeding and growing before going home for the first time that July.

Today, Dylan is now able to walk with the help of his forearm crutches and a walker. As he continues to grow, he works with physical therapists to ensure his progress remains on-track and long-lasting. At three and a half years old, Dylan is starting preschool after being cleared to resume his typical activities. Despite the hurdles, Dylan does everything a typical kid would: He loves music, singing, vehicles and all things construction, and especially loves being an older brother to his baby sister, Rue.