Spina bifida is the most complex congenital abnormality of the nervous system that is compatible with long-term survival.
When a mother and family receive a diagnosis before birth that their child has spina bifida, it can be a crushing time. At the Chicago Institute for Fetal Health, from the moment they arrive, all of the center’s vast resources are focused on that mom and that family, and the team joins them on their journey.
“They get to know us from the very beginning,” said Robin Bowman, MD, Director of the Multidisciplinary Spina Bifida Center and Co-Director of Fetal Neurosurgery for the Chicago Institute for Fetal Health. “The day that the mom and dad get the diagnosis and they come into the institute, they meet the full team. And it is that team that will be at their side now and will follow that child throughout childhood and into adulthood. We are there at the beginning and there for the long-term.”
The Chicago Institute for Fetal Health is the only fetal center in Illinois that offers spina bifida surgery in utero. Since damage to the spinal cord progresses as the baby develops, studies have shown that early repair can provide improved outcomes versus waiting until after birth, which has been the traditional treatment.
Typically, patients who are treated postnatally may end up having more restricted lower extremity movements and also may have a greater chance for developing hydrocephalous; a condition where extra fluid accumulates in and around the brain, putting pressure on the brain.
Dr. Bowman and her team are already seeing remarkable results from the babies treated in utero. “The thing that has stood out to me the most about my children who I have closed in utero is that they have very impressive function and movement in their lower extremities and feet,” said Dr. Bowman, “more so than I would have expected for their level of lesion.”
Dr. Bowman has worked with children with spina bifida for many years. In addition to being a key member of the Chicago Institute for Fetal Health team, she is also Director of the Multidisciplinary Spina Bifida Center at Ann & Robert H. Lurie Children’s Hospital of Chicago, one of the first multidisciplinary clinics for spina bifida in the country and one of the largest multidisciplinary spina bifida clinics in the world. “Given that our clinic started in the mid-70s, we have many years of experience taking care of children with open spina bifida, which is a complete advantage for our patients and their families,” said Dr. Bowman.
The Multidisciplinary Spina Bifida Center’s clinical team is comprised of experts from a variety of fields including pediatric neurosurgery, orthopaedic surgery, urology, physical medicine and rehabilitation, social work, physical/occupational/speech therapy and nutrition.
“It takes a whole team of subspecialists to take care of these children,” said Dr. Bowman. “I am a pediatric neurosurgeon and care for the brain and the spinal cord, but spina bifida also affects the urologic system, it affects the lower extremities… so it’s all of us working together to give the best outcomes for these children with a very complex congenital anomaly.”
Over the last four years, The Chicago Institute for Fetal Health’s spina bifida patient volume has nearly quadrupled, as the Institute now has the capability of treating babies with very severe conditions.
The Spina Bifida Multidisciplinary Center and The Chicago Institute for Fetal Health continue to push boundaries, continually seeking the best innovative and comprehensive clinical care for patients and their families.