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What is Spina Bifida (Myelomeningocele)?

It is described as where the spinal cord has not formed properly.

There are different types of spina bifida. A myelomeningocele is the most severe. 

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In this form, the bones of the spine (vertebrae) and the skin that surrounds the spinal cord are not fully closed. Part of the spinal cord and the nerves come through the opening in the back. At birth, the baby may have a sac on the back at the site of the spinal defect. The baby will need surgery soon after birth to close the sac. It may depend on the location of the spinal defect, children will have some problems with their legs, bladder and bowel control. Leg problems range from weakness in the legs to complete loss of movement.

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Possible Problems 

  • Hydrocephalus (increased fluid in the brain) occurs in 95% of children with the spinal defect

  • Kidney, bladder and/or bowel control problems, and bladder infections

  • Decreased movement and lack of feeling to pain, touch, and temperature in areas below the level of the spinal defect

  • Foot and leg defects

  • Scoliosis (abnormal curving of the spine)

  • Skin breakdown because of lack of feeling

  • Chiari defect (problem with the brain that can cause hand weakness, swallowing and speech problems, and often breathing problems). Almost all patients have a Chiari defect, but only a few of them will need surgery

  • Latex allergy

The child should be watched closely by the team listed below.

  • Nurses who manage the care and help you to find resources and provide patient/family education

  • Neurosurgeon who’s focus is in the brain and spinal cord (myelomeningocele, hydrocephalus)

  • Urologist who helps with kidney and bladder function and infections

  • Orthopedic Surgeon who can help with the care of leg deformities and scoliosis

Therapists and Rehab Specialists who help with movement, exercise, and can help you adapt to routine daily activity

  • Psychologist can help you with social, education, and interactive concerns

All of these listed are often seen on the same day at the Spina Bifida Clinic at UW Hospital. To schedule an appointment, please call the AFCH Pediatric Specialty Clinics at (608) 263-6420.