Data and Statistics about Spina Bifida
In the United States…
- Each year, about 1,500 babies are born with spina bifida.
- Hispanic women have the highest rate of having a child affected by spina bifida compared with Non-Hispanic White and Non-Hispanic Black women: In 1992, the U.S. Public Health Service recommended that all women of childbearing age consume 400 micrograms (mcg) of folic acid daily to reduce the risk of having a pregnancy affected by neural tube defects (NTDs), such as spina bifida.
- Hispanic: 4.17 per 10,000
- Non-Hispanic Black or African-American: 2.64 per 10,000
- Non-Hispanic White: 3.22 per 10,000
- Subsequently, the U.S. Food and Drug Administration mandated adding folic acid to all enriched cereal grain products by January 1998. The prevalence rate of spina bifida declined 31% from the prefortification (1995–1996) rate of 5.04 per 10,000 to the post-fortification (1998–2006) rate of 3.49 per 10,000.
- An estimated 1,000 more babies have been born without an NTD each year since fortification began.
Quality of Life
- Many adolescents and young adults with spina bifida report a high level of satisfaction with their health-related quality of life, are entering and succeeding at college life, and are participating in sports and other recreational activities.
- Some adolescents and young adults are concerned about their future because of secondary health conditions they experience frequently.
- While many parents of adolescents and young adults with spina bifida are satisfied with their children’s overall quality of life, they say their children face challenges in continence and getting around.
- The 2009 estimate of medical costs for the first year of life for a child with spina bifida was $52,415.
- The lifetime medical cost for a person with spina bifida was estimated to be $460,923 in 2009.
- The lifetime nonmedical cost for a child with spina bifida, which includes education and developmental services such as early intervention services and counseling, was estimated to be $56,511 in 2009.