Services for Adults with Spina Bifida

As the only spina bifida center in Maryland that treats adults, our medical team offers coordination and continuity of care throughout the lifespan. While your primary care physician is essential for your standard medical management, we are your medical home for all of your spina bifida-related care.

In addition to providing management and care, we can also facilitate access to Kennedy Krieger’s comprehensive team of specialists to assist with specific educational, behavioral and other therapy needs. Our interdisciplinary and innovative care for adults is centered around routine monitoring to develop an individualized treatment plan that works best for each patient. 

Routine care for spina bifida in adults includes:

• Adults with spina bifida support group  – This is a collaborative effort with adults with spina bifida, led by a clinical social worker. This support group allows participants to meet and interact with other adults with spina bifida and focuses on issues and concerns that are most important to the individual.
• Dedicated social work support – Patients work with a spina bifida specialist who provides counseling and evaluation for needed resources with goal of maximizing quality of life.
• Neurological monitoring– As spinal cord experts, the center’s physical medicine and rehabilitation team provides routine monitoring for symptomatic tethered spinal cord and shunt malfunction. We partner with neurosurgical experts at Johns Hopkins in spina bifida-related care, including shunt and tethered cord surgical needs
• Neurogenic bowel and continence management – Spina bifida leads to nerve damage that impacts the coordination of the bowel and bladder. Our physical medicine and rehabilitation physicians, continence nurse practitioner and nursing team are neurogenic bowel specialists who are passionate about helping people reach their goals for bowel control/continence and understand the impact this has on quality of life. This includes medication management, transanal irrigation training (including Peristeen and Navina), and antegrade flushes with Chait tube and ACE irrigation management.
• Urological care – Spina bifida urology specialists provide essential oversight for management and prevention of kidney and bladder issues, including testing as well as pharmacological interventions
• Physical therapy and occupational therapy – Spina bifida specialists provide oversight to your rehabilitation needs with a focus on maximizing independence, strength, and mobility.
• Seating services – wheelchairs and assistive equipment to improve mobility.