Overview

About spina bifida

If prenatal testing detects spina bifida or your child shows symptoms after birth, UW Health specialists provide expert care and treatment. We work with children, teenagers and families living with spina bifida. 

We are a Spina Bifida Association Clinic Care Partner. Our clinic meets the highest care standards, providing the best possible care for your child. Your child’s care team includes doctors and nurses from specialties such as neurosurgery, occupational therapy, physical therapy, psychology, speech therapy and urology. We focus on improving the lives of people from infancy through adulthood with spina bifida.

Types and risk factors

How spina bifida develops

Spina bifida occurs when a baby’s backbone and spinal cord do not fully develop.

In cases of spina bifida, as your baby develops in the womb, the spine does not close. The spinal cord is exposed through their back. This opening allows the spinal cord and nerves to push outside the body. Low levels of folic acid in the mother can cause spina bifida in a baby.

Three types of spina bifida

There is no opening in your child’s back, so it is a “hidden” form of spina bifida. Neurological problems can appear as your child ages. Lipomyelomeningocele is a form of spina bifida occulta related to a fatty mass in the spinal canal that extends out through an opening in the vertebrae.

Your child’s spine creates an opening in their back. A sac forms on the outside of their body, filled with cerebrospinal fluid (CSF).

The spinal cord and nerves push through an opening in the spine and stick out through your child’s back. This is the most severe form of spina bifida.

Symptoms and diagnosis

How we diagnose spina bifida

Our specialists often detect spina bifida before birth. We treat your child right away.

We use a blood test to check for spina bifida. As a standard procedure, we perform the alpha-fetoprotein (AFP) test between the 16th and 18th weeks of pregnancy. High levels of AFP can indicate spina bifida. Other diagnostic tests include:

  • Amniocentesis

  • Imaging tests such as CT or MRI 

  • Ultrasound

Spina bifida symptoms

Spina bifida symptoms vary. They can be mild or severe. Symptoms depend on the type of spina bifida and the location of the spine opening. Symptoms can include:

  • Decreased bladder and bowel control

  • Hydrocephalus (accumulation of cerebrospinal fluid in the brain)

  • Muscle and bone abnormalities

  • Nerve damage

  • Paralysis

Treatments and research

Treatment options for all types of spina bifida

How we treat your child’s spina bifida depends on two things: the type of spina bifida and the severity of your child’s symptoms. Surgery to repair the spine and close any opening is often the first treatment. This procedure prevents damage to the nerves and spinal cord.

Other treatments may include:

  • Occupational therapy

  • Orthotics

  • Physical therapy

  • Psychological services

  • Rehabilitation therapy

  • Speech therapy

  • Surgery to repair neurologic, orthopedic or urological conditions

  • Vocational educational counseling

Meet our team

Specialty pediatric spina bifida care

The spina bifida care team at UW Health includes pediatric experts in neurology, neurosurgery, occupational therapy, orthopedics, physical therapy, psychology, rehabilitation, speech therapy and urology.

Our providers

Locations

Specialized care close to home

We provide specialized care for spina bifida at UW Health clinics in Madison.

Patient support services

Resources and information to help you

Patient resourceSpina bifida care from infancy to adulthood
Everything you need to know about how the experts at UW Health care for your growing child.