Spina Bifida and Myelomeningocele

Children with myelomeningocele (MM), the most common and severe form of spina bifida, are one of the major treatment groups at Shriners - Chicago. As a result of a malformed spine and damaged spinal cord and nerves, children with MM have a wide variety of medical problems, ranging from muscle weakness or paralysis of their lower extremities, bowel and bladder incontinence, and sometimes hydrocephalus (fluid buildup in the brain). MM patients have less muscle mass than the average orthopaedic patient and tend to be less active. Thus, MM patients often use fewer calories than most children, and balanced, controlled nutrition is an important issue.

There are usually significant cognitive and social issues in kids with myelomenigocele and some types of spina bifida. Many young people with MM may seem as if they understand things better than they do. They may be quite able to keep up a conversation, yet not really comprehend what is being said. Patient education may be challenging, because patients with MM require constant reteaching.

The strong team structure at Shriners - Chicago makes treatment of these young children both comprehensive and supportive. The members of the team include an orthopaedic surgeon, urologist, pediatrician, neurosurgeon, nurses specially trained in urological management and pressure ulcers, psychologist, care coordinator, clinical dietitian, and physical, occupational, and recreation therapists.

Educational materials for children with spina bifida and myelomeningocele are readily available through the Spina Bifida Association. The myelomeningocele/spina bifida team also recommends the text Children with Spina Bifida: A Parent's Guide, edited by Marlene Lutkenhoff, R.N., M.S.N., Woodbine House, 1999.

Spina Bifida Association of America