Spina Bifida Program

The Spina Bifida Program at Children's Hospital of Philadelphia provides comprehensive medical care and long-term follow-up for infants, children and teens with spina bifida.

Established in 1964, CHOP’s Spina Bifida Program was the first in the nation dedicated to the multidisciplinary care of patients with spina bifida. We have a longstanding mission of partnering with patients and families to provide individualized care that maximizes each child’s potential. Today, we follow more than 500 patients from prenatal diagnosis to adulthood.

No matter what stage of your journey, we strive to provide coordinated care that is easy to navigate and integrates the patient, family, primary care physician, and specialists. We guide patients and families through every stage of growth and development.

Conditions we treat include:

  • Myelomeningocele
  • Myeloschisis
  • Meningocele
  • Lipomyelomeningocele
  • Tethered cord
  • Caudal regression syndrome/sacral agensis

How we can help

Children with spina bifida have complex medical issues involving multiple body systems such as the central nervous system, musculoskeletal system, urinary and gastrointestinal systems. Our interdisciplinary team collaborates with families to provide the best outcomes for each individual child.

As part of the Spina Bifida Program, your child has access to:

  • Neurosurgical management, including prenatal and postnatal closure and ongoing monitoring
  • Urologic care
  • Individualized bowel management
  • Orthopaedic care, bracing, and durable medical equipment
  • Developmental and neuropsychological educational evaluations
  • Patient and family education
  • Mental health screening
  • Sleep studies
  • Independence and self-management training
  • Social work and connection to community resources
  • Transition services into adulthood

Why choose us

Ongoing medical and developmental assessments from a multidisciplinary team are the standard of care provided to all children in the Spina Bifida Program. Our team of pediatric specialists includes:

  • Board-certified pediatricians specializing in the care of children with spina bifida
  • Neurosurgeons
  • Urologists
  • Orthopaedic surgeons
  • Colorectal surgeons
  • Specialty-trained nurses and social workers
  • Nurse practitioners
  • Physical, occupational and rehabilitation therapists
  • Neuropsychologists
  • Specialists in neurology, pulmonology, nephrology, gastroenterology, genetics, orthotics and others as needed

Coordinated, multidisciplinary care bridges the gap between primary and specialty care, and provides a vital link to medical and support services available to children with these disorders.

Your child's appointment with the Spina Bifida Program

The Spina Bifida Program clinic is conducted on Wednesdays in the Musculoskeletal Center on the fourth floor of the Buerger Center.

A typical clinic day includes visits with a general pediatrician specializing in spina bifida, a physical therapist, an orthopaedic surgeon as needed, a social worker, a nurse specialist, a urologist and a neurosurgeon.

At the end of each visit, patients are provided with a care plan and a complete report is sent to your child’s primary care physician. The care team makes recommendations to schools, community service groups, and equipment providers as needed. Additional referrals to subspecialists are also arranged when indicated.