The Spina Bifida Association has named October Spina Bifida Awareness Month, which is a time to celebrate the hundreds of thousands of people living with spina bifida. Through the awareness month, the association aims to raise more awareness and support for those living with spina bifida.
To mark the month, the Department of Physical Medicine and Rehabilitation as well as the Departments of Neurosurgery and Urology are sharing the stories of three incredible patients with spina bifida. Each week, the departments will release a new patient story on Friday, as part of a series, that specifically focuses on the transition from pediatric to adult spina bifida care. Those patients are:
Spina bifida is a congenital disorder in which the brain or spinal cord, and/or their protective coverings, fail to develop properly due to the failure of the fetus’s spine to close during the first month of pregnancy. The resulting nerve damage is permanent, leading to varying degrees of paralysis of the lower limbs.
Generally, care for pediatric patients with spina bifida is a given, but adult care for spina bifida is harder to come by. Advancements in treatment have allowed patients with spina bifida to live longer than in the past, which has left the future unclear for healthcare beyond pediatrics. It is estimated that there are now many more adults living with spina bifida than children, so the needs for adults is tremendous and growing.
In 2012, UAB answered the call to care for spina bifida patients into adulthood and launched a new clinic for adults, which is supported by the Department of Physical Medicine and Rehabilitation as well as the Departments of Neurosurgery and Urology . The multidisciplinary adult spina bifida clinic, one of the only in the country, works with providers at Children’s of Alabama to provide seamless care as patients age out of the pediatric space.
Spina bifida in adulthood poses new, and sometimes more threatening, challenges for patients and their care team. For instance, many adult patients struggle with kidney function.
There are varying degrees of severity for the condition, which has led the medical community to classify spina bifida cases within four categories from least to most severe: occulta, closed neural tube defects, meningocele, and myelomeningocele.
An independent life for spina bifida patients is still possible, even with the most severe form, myelomeningocele, which can cause changes in brain structure, leg weakness, and bladder and bowel dysfunction. Often, no two patient cases are the same and the care team tailors a plan based on each patient’s unique needs.
The departments are honored to share the stories of three patients throughout the month and hope to play a role in dispelling the myths that surround spina bifida. One patient assists first responders across North Alabama counties, while another who has her master’s in social work is now pursuing a career in the medical field, while a final patient is a licensed social worker who fundraises and advocates for spina bifida.