As a child with spina bifida matures, there are problems that may be encountered as a young adult. Spina bifida is a complex disease with different types of defects.  Spina bifida occulta is a defect in the bone of the spinal column without protrusion of the cord or membrane. Spina bifida aperta is a defect with protrusion of the cord and/or membranes.  A child may have hydrocephalus (excessive spinal fluid in the brain) associated with spina bifida, which may require a shunt to normalize brain pressure. Most of the research to date has been done on children.

As part of the ASPINE (Adolescents with Spina Bifida in the Netherlands) study, information was sought to determine secondary problems in young adults with spina bifida. The study included patients with spina bifida occulta, spina bifida aperta with and without hydrocephalus. The research was done by means of physical exam and neuropsychological tests. The young adults studied who had lesions higher in the low back and had spina bifida aperta with hydrocephalus were found to have significantly more problems than other young adults who had spina bifida occulta or spina bifida aperta without hydrocephalus.

Neurological problems, such as epilepsy and abnormal visual acuity, were found most often in the spina bifida aperta with the hydrocephalus group of participants. The higher level lesion group and the spina bifida aperta group had the highest instance of orthopedic problems, including problems with balance, contractures in the hips and knees, and scoliosis. Problems with bowel and bladder incontinence required two-thirds of the patients to use napkins. Problems with sexual function were common in the group studied, particularly for those with higher lesions and spina bifida aperta.  About 15% of the patients had pressure sores. Because of the secondary problems found on this study, the authors believe that lifelong care for patients with spina bifida will be necessary.  


For more information: “Secondary Impairments in Young Adults with Spina Bifida,” M. Verhoef, MD; H. Barf, MS; M. Post, PhD; F. Asbeck, MD, PhD; R. Gooskens, MD, PhD; A. Prevo, MD, PhD; Developmental Medicine and Child Neurology, volume 46, issue 6, p.420-427, June 2004.