Fact Sheet: Spina Bifida

Spina bifida (SB) is one of the most common birth defects, resulting in the failed closure of one or more vertebrae during the early weeks of gestation. SB is thought to be caused by low levels of folic acid during the first few weeks of pregnancy, though genetic factors and maternal obesity have also been implicated. Youth with SB experience a multitude of chronic health complications, including urinary, bowel, orthopedic and cognitive difficulties.

Prevalence and Course

SB occurs in approximately three out of 10,000 births in the United States. Severity of SB varies according to both biologic and environmental determinants such as the level of the spinal lesion and neurological complications from procedures (e.g., repeated shunt replacements). Children and their families manage complex medical regimens, including tasks related to catheterization, bowel programs, use of orthopedic devices, skin checks and monitoring of shunt functioning.

Health and Psychosocial Consequences

Youth often have varying degrees of paralysis, orthopedic abnormalities and difficulties related to executive functioning. Social impairment is a salient concern in this population; youth with SB often demonstrate higher rates of social isolation, social immaturity and have smaller social networks compared to typically developing youth.

Evidence-based Assessment

Relevant areas of assessment include: physical characteristics (e.g., spinal lesion level and ambulation), intellectual functioning (e.g., IQ, attention and executive functions), psychosocial adjustment, family functioning, quality of peer relationships, medical adherence, and autonomy-related development. A multimethod and multi-informant approach is typically recommended, as youth with SB and their parents have shown differing perceptions of individual and family functioning.

Culture, Diversity, Demographic and Developmental Factors

Prevalence rates are higher in females and individuals of Hispanic backgrounds. Although enduring deficits occur (e.g., academics, neurocognitive function, social function), individuals with SB have shown resilience in some domains (e.g., family relationships, externalizing symptoms and drug use). The complicated transition to adult health care tends to be a challenge for many youth and their families.

Evidence-based Interventions

There is currently a great need for psychological interventions targeting social functioning, medical adherence, autonomy and family functioning. A camp-based intervention utilizing goal setting and group workshops has demonstrated improvements in health-related independence and attainment of social and health goals.

References

Burmeister, R.R. (2005). Attention problems and executive functions in children with spina bifida and hydrocephalus. Child Neuropsychology, 11(3), 265-283.

Centers for Disease Control and Prevention (2011). Neural tube defect ascertainment project. Retrieved April 14, 2012.

Holmbeck, G. N., DeLucia, C., Essner, B., Kelly, L., Zebracki, K., Friedman, D., & Jandasek, B. (2010). Trajectories of psychosocial adjustment in adolescents with spina bifida: A 6-year, four-wave longitudinal follow-up. Journal of Consulting and Clinical Psychology, 78(4), 511-525.

O’Mahar, K., Holmbeck, G. N., Jandasek, B., & Zukerman, J. (2010). A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 35(8), 848-856.

Sawin, K. J., Hayden Bellin, M., Builta, E., Vasel, L., & Buran, C. F. (2006). Cross-informant
agreement between adolescents with myelomeningocele and their parents. Developmental Medicine and Child Neurology, 48(3), 188-194.