Spina bifida, also known as myelodysplasia, is the most common spine abnormality present at birth. Spina bifida occurs when the neural tube, which becomes the spine bones, and the spinal cord do not develop properly in infants before birth. Patients with this neurological condition may require ongoing care and treatment throughout their lives.

Interdisciplinary Care

The adult spina bifida team at University of Chicago Medicine includes pediatric neurosurgeons, neurologists, orthopaedic surgeons, urologists and rehabilitation specialists. These specialists work collaboratively to help patients relieve symptoms, preserve function and lead the fullest lives possible from childhood through their adult years.

There are three types of Spina bifida: spina bifida occulta, occult spinal dysraphism, and myelomeningocele.

Spina Bifida Occulta

Spina bifida occulta is a mild form in which the spinal cord is normal, but the spinal bones fail to form normally at one or more level. Between one in three and one in four people in the world, are born with this mild anomaly.

Occult Spinal Dysraphism

Occult spinal dysraphism (tethered cord syndrome) is a series of spinal and spinal cord abnormalities that comprise a continuum of severity. Though in all cases the skin of the spine is closed, a dimple, hairy patch, or reddish birthmark may be visible in the midline of the back. In the least severe forms, this syndrome can require a simple surgery that is curative. In the more severe forms, a child may need ongoing monitoring and intervention throughout their lives.

Adult patients with tethered cord syndrome may have skin abnormalities along the midline of their backs. They also can develop benign fatty collections or tumors (lipomyelomeningocele) in the spine, which can connect to the skin. Symptoms include back pain, leg weakness and/or change in bladder function.

Myelomeningocele

In this most severe form of spina bifida where the spinal cord is visible outside of the body at birth. All children with myelomeningocele require urgent surgery after birth and 90 percent of patients will require treatment for hydrocephalus — usually an implanted shunt — at some time in their lives.

While the cause of spina bifida is not known, researchers are investigating genetic, nutritional and environmental factors.

Children with spina bifida and tethered cord syndrome undergo surgery soon after diagnosis. When these patients transition from childhood to adulthood, they often require ongoing care needs. These might include:

  • Management of shunting devices
  • Medical intervention for problems with cognitive, kidney, bowel and extremity function
  • Ongoing management of bladder dysfunction 
  • Surgery to untether the spinal cord if it was undiagnosed and not treated during childhood