What Does the Future Hold for Children with Spina Bifida?

^{Reviewed by: My Child Without Limits Advisory Committee November 2009}

Thanks to huge strides in medical and surgical interventions over the past 40 years or so, children who are born with spina bifida today can go on to lead relatively active and productive lives. According to the Spina Bifida Association, approximately 90 percent of infants affected with the defect live well into adulthood. In addition, about 80 percent have normal intelligence as evidenced by their IQ scores. The majority of these children do well in school, and many are involved in modified sports activities even with the physical difficulties that may confront them. In fact, around 75 percent participate in competitive sports and organized recreational activities.

How the child will progress in life depends on the number and severity of abnormalities and associated complications. Most children with the disorder can walk, usually with assistive devices. If learning problems develop, early educational intervention is helpful. With well-coordinated multidisciplinary care, the majority of people with spina bifida live well within the mainstream of society. Twenty-year follow-up studies of children with spina bifida indicate that they go to college at the same rates as the general population, and most are actively employed. As advancements in medical care for these children continue to expand, the outlook continues to get better.

Short- and long-term outlook

The extent of disability and other continuing issues are basically linked to the following factors:

• The site along the spine where the nerves were damaged (as a rule, the lower the area of the spine, the better the outlook)
• the size of the lesion
• the timing and type of treatment (much depends on how promptly the defect is detected and how aggressively it is treated)
• the presence of any other birth defects (for example, even with advanced hydrocephalus at birth, the child may have average or above average intelligence if there are no other brain abnormalities)

If the lesion is high up in the spine, the child may well have paraplegia (inability to move the legs from the hips down) and will require a wheelchair for mobility. However, if the thigh muscles have movement and there is sensation in the legs below the knees, then the child probably will be able to walk with the aid of braces.

The majority of children with spina bifida are able to manage their urine output by doing regular self-catheterization (using a tube to drain urine from the bladder). Still, children with spina bifida have a higher rate of urinary tract disorders than

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What Research Is Being Done to Find a Cure or Additional Treatments for Spina Bifida?

Download the Introduction to Spina Bifida.