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A free resource that provides access to information and support for individuals and families living with developmental disabilities.
Philip A. Keelty Center for Spina Bifida and Related Conditions
About the Center:
The Philip A. Keelty Center for Spina Bifida and Related Conditions is supported, in part, by the ongoing support of the Silberstein-Harryman Endowment.
The Philip A. Keelty Center for Spina Bifida and Related Conditions serves children and adults with spina bifida, myelomeningocele (meningomyelocele) or myelodysplasia, as well as other related conditions of the brain and spine such as hydrocephalus, Arnold-Chiari malformation and tethered spinal cord syndrome. We also see children with other complex birth defects, such as caudal regression syndrome, sacral dysgenesis and other multiple congenital anomaly syndromes.
Our mission is to assist individuals with spina bifida and related conditions in leading healthy and satisfying lives. The Spina Bifida Center has a multidisciplinary team that includes members specializing in pediatrics, pediatric neurology, pediatric urology, pediatric orthopedics, nursing, physical therapy, occupational therapy, neuropsychology and social work. Through an interdisciplinary approach, we provide quality medical care that focuses on optimizing health and function, preventing secondary conditions and coordination of health care services.
Spina bifida is a complex condition that presents challenges in multiple domains. Although experts agree that multidisciplinary care is the gold standard of medical care for individuals with spina bifida, the multidisciplinary team often does not address issues that fall outside the medical domain, such as school readiness, vocational training or participation in sports. We propose a new conceptual model for spina bifida services throughout the lifespan that integrates issues and perspectives from multiple arenas including medical, habilitative, educational and social domains. Our model incorporates the latest WHO framework for conceptualizing function and disability, which not only includes the dimension of body function and structure, but also the dimensions of activity and participation. Our model also emphasizes the importance of anticipatory guidance and planning for transitional periods.
Evaluation and treatment of spina bifida and secondary conditions (such as seizures, coordination problems or weakness, learning disabilities, chronic wounds or incontinence) is achieved through a working partnership between interdisciplinary team members, including the patient and family. Treatment plans are coordinated with the patient's primary care provider, family, school and community.
Primary Diagnoses Served:
Additional Diagnoses, Subsets and Synonyms Served:
- Arnold-Chiari Malformation (Chiari malformation)
- Caudal regression
- Sacral Dysgenesis
- Tethered Spinal Cord Syndrome
- Childhood Syringomyelia
- Childhood-acquired spinal cord injury (in conjunction with the KKI rehabilitation team)
- Chronic Wounds
- Decubitus Ulcers
- Neurogenic Bladder (Neuropathic Bladder)
- Neurogenic Bowel