Support for Spina Bifida in Children

Spina bifida is a chronic condition that often requires lifelong care. Neuromuscular and rehabilitation specialists at Hassenfeld Children’s Hospital at NYU Langone can help manage your child’s symptoms and maximize his or her ability to live as independently as possible.

Throughout childhood, adolescence, and teenage years, our doctors ensure that any physical or neurological issue is addressed before it becomes a more serious problem in adulthood. Our experts in pediatric neurosurgery understand the unique challenges children with spina bifida and their families face and collaborate with orthopedists, physiatrists, and neuropsychologists to help your child reach his or her full social, cognitive, and physical potential.

Additional child and family support services and resilience programs are provided by Sala Institute for Child and Family Centered Care.

Rehabilitation Support

Children with spina bifida often benefit from ongoing physical and occupational therapy throughout adolescence and adulthood. Specialists at Rusk Rehabilitation provide support and education to help families meet their child’s evolving needs.

Our doctors, therapists, social workers, and child life specialists help children and teens prepare for school and new social situations.

Developmental Assessment

NYU Langone’s neonatal experts may refer you to our neuropsychologists to assess your child’s cognitive function and look for signs of developmental delays, which include motor, learning, speech, and feeding difficulties. Depending on your child’s specific challenges, our doctors can refer him or her to the appropriate therapists at Rusk Rehabilitation.

Urological Support

Most children with spina bifida have problems controlling bladder and bowel function, and almost all require lifelong follow-up care. Pediatric urologists and gastroenterologists provide care from infancy through young adulthood.

Often, our urologists recommend medication to relax the bladder. Many children require clean intermittent catheterization, which is a technique used to empty the bladder. Caregivers perform this procedure by inserting a slim, flexible tube through a child’s urethra to empty his or her bladder. Our hospital and urologist nurses are skilled in teaching parents how to perform this procedure so they can care for their children at home.

Clean intermittent catheterization may be needed for some infants who cannot empty their bladders following initial neurosurgery. This procedure may also help older children transition to achieving urinary continence.

Our spina bifida specialists also offer continued care through adolescence and young adulthood, and offer services to help transition your child’s care to adult providers, who understand the unique social and medical challenges that face adults living with this condition.

Revision Surgery

Occasionally, children require additional surgery to relieve pain, maintain mobility, or ensure that a shunt to drain fluid from the brain continues to work properly. Our orthopedic surgeons and neurosurgeons schedule regular follow-up visits to determine if additional surgery is needed to prevent an issue from worsening, evaluate the development of a tethered spinal cord, or prevent a recurrence of hydrocephalus due to a malfunctioning implanted shunt.