The Philip A. Keelty Center for Spina Bifida and Related Conditions at Kennedy Krieger Institute treats children and adults with histories of myelomeningocele, lipomeningocele, sacral agenesis, tethered cord syndrome, hydrocephalus and syringomyelia/syrinx. Our coordinated care helps ensure continued treatment into and throughout adulthood. The center is a designated Clinic Care Partner of the Spina Bifida Association (SBA). Clinics who become SBA Clinic Care Partners have met 10 standards to implement best practices so that patients receive the best care possible to have fulfilling lives.
As the only spina bifida center in Maryland that treats adults, our medical team offers coordination and continuity of care throughout the lifespan. Our interdisciplinary and innovative care for adults is centered around routine monitoring to develop an individualized treatment plan for each patient.
Routine care for spina bifida in adults includes:
- Support group for adults with spina bifida: This group is led by a clinical social worker and focuses on issues and concerns important to group members.
- Dedicated social work support: Patients work with a spina bifida specialist who provides counseling and evaluation for necessary resources.
- Neurological monitoring: We provide routine monitoring for symptomatic tethered spinal cord and shunt malfunction and partner with neurosurgical experts in shunt and tethered cord surgical needs.
- Neurogenic bowel and continence management: Services include medication management, transanal irrigation training (including with the Peristeen® and Navina systems), and antegrade flushes with Chait catheters and antegrade colonic enema (ACE) irrigation management.
- Urological care: Our urology specialists provide essential oversight, including testing and pharmacological interventions, of the management and prevention of kidney and bladder issues, as well as urinary incontinence.
- Physical and occupational therapy: Our specialists provide oversight of rehabilitation needs, with a focus on maximizing independence, strength and mobility.
- Seating services: Seating experts fit patients for wheelchairs and other assistive equipment, as needed, to improve mobility.
Visit KennedyKrieger.org/SpinaBifida for more information about our services for children and adults or to refer a patient.
