Data and Statistics

• Each year, about 1,500 babies are born with spina bifida. [Read article summary]
• Hispanic women have the highest rate of having a child affected by spina bifida, when compared with non-Hispanic white and non-Hispanic black women. Data from 12 state-based birth defects tracking programs from 1997-2007 were used to estimate the total number of pregnancies affected by spina bifida compared to the total number of live births (also called the prevalence of spina bifida) for each racial/ethnic group:
  • Hispanic: 3.80 per 10,000 live births
  • Non-Hispanic black or African-American: 2.73 per 10,000 live births
  • Non-Hispanic white: 3.09 per 10,000 live births

[Read article summary]

• In 1992, the United States 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 birth defects known as neural tube defects (NTDs), which include spina bifida. [Read article] ). In 1996, the United States Food and Drug Administration (FDA) mandated that by January 1, 1998 all grain products labeled as ‘enriched’, such as breads, cereals, and rice, have folic acid added to them to help reduce the risk of NTDs. This is known as folic acid fortification.
  • One study using data from 19 state-based birth defects tracking programs estimated the change in prevalence of NTDs before and after the introduction of folic acid fortification. Overall, a 28% reduction in prevalence was observed for anencephaly (a birth defect of the brain) and spina bifida. A greater reduction (35% reduction) was observed among programs that actively looked for a neural tube defect during a women’s pregnancy (prenatal ascertainment) than for programs that did not (21% reduction). [Read article]
  • Since folic acid fortification began, there are about 1,300 babies born each year in the United States without an NTD that would have had an NTD if there had not been fortification. [Read article]

A 2013 study using data from the Healthcare Cost and Utilization Project (HCUP) 2013 National Inpatient Sample (NIS) showed that hospitalizations related to spina bifida cost more than $600 million in 2013 for people of all ages. 
[Read article]

A 2012 study using data from Florida showed

• Hospital costs for a baby born with spina bifida were about $21,900 (ranging up to $1,350,700) in the first year of life.
• About 18% of babies with spina bifida had more than three hospital stays in their first year of life.
  • • Median number of hospital stays per infant with spina bifida: 2 (range: 1-12 stays)
    • Median number of total days in the hospital (for hospital stays started in the first year of life): 14 (range: 0-476 days)
• Infants who had private insurance only or who had a mix of public and private insurance had fewer hospital stays than infants who had public insurance only.

[Read article summary]

• 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.

[Read article summary]