Two out of every 1,000 children born have spina bifida. No one is sure what causes it, but the best explanation is that multiple factors are involved, some environmental and some genetic.
To treat this complex condition, Lurie Children’s has one of the largest Spina Bifida Multi-Disciplinary Clinics in the world. In fact, over the last year, the center has had more than 3,016 patient visits.
“Our center was one of the first multi-disciplinary clinics for spina bifida in the country,” said Robin Bowman, MD, Director of the Multidisciplinary Spina Bifida Center and Associate Professor of Pediatric Neurological Surgery, Northwestern University Feinberg School of Medicine. “We recognized the need for this type of patient care as early as 1975 and have been growing ever since.”
In fact, Lurie Children’s has the 2nd largest patient enrollment of the 21 hospitals in the National Spina Bifida Patient Registry (NSBPR), established by the Centers for Disease Control and Prevention. The CDC’s registry collects information from clinics around the country and documents what treatments and services align with the most improved health outcomes. The team at Lurie Children’s meets monthly to advance the research efforts. “The research component of our center is growing so quickly that we will soon be adding additional staff,” said Dr. Bowman.
The Spina Bifida Multi-Disciplinary Clinic team is comprised of experts from a variety of fields including pediatric neurosurgery, orthopaedic surgery, urology, physical medicine and rehabilitation, social work, and physical/occupational therapy. Meeting weekly, the multi-disciplinary team members discuss each case, providing expert collaborative decisions, enhancing the care each patient receives.
Spina bifida is a condition that requires good communication between physicians and extreme vigilance on the part of families too. A slight decline on a muscle test or change in bladder or bowel function, for instance, may indicate a serious underlying complication such as a shunt malfunction.
“The multi-disciplinary aspect of this clinic allows for real-time communication between clinicians, which is critical for treating this condition,” said Dr. Bowman. “If one of us has a concern, or if a parent has a concern, we can reach out and get an answer immediately.”
“In addition to our existing team,” said Dr. Bowman, “we are also expanding further, advancing into prenatal surgery and partnering with our Fetal Medicine team.”
The Spina Bifida Multi-Disciplinary Clinic continues to push boundaries, continually seeking the best innovative and comprehensive clinical care for patients and their families.