Data & Statistics on Spina Bifida
Spina bifida is a birth defect that affects the spine. Read below for the latest national statistics on spina bifida in the United States.
- Each year, about 1,645 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 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
- 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]
The estimated lifetime cost of care for a person with spina bifida, with caregiving costs, is $791,900. [Read Articleexternal icon]
A 2013 study using data from the Healthcare Cost and Utilization Project (HCUP)external icon 2013 National Inpatient Sampleexternal icon (NIS) showed that hospitalizations related to birth defects of the brain and spine (including spina bifida) cost more than $1.6 billion in 2013 for people of all ages.
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.
Researchers studied the physical and psychological health and social well-being of a group of Midwestern children and young people with spina bifida who were between 8 and 15 years of age, and their parents. Researchers collected information from this same group two years later, comparing the health-related quality of life of children and young people with spina bifida to a comparison sample from a previous study of young people with and without chronic conditions. Chronic conditions are health issues that last a long time and do not go away quickly.
This study found that
- Children and young people with spina bifida reported lower health-related quality of life than youth with other chronic health conditions. Healthcare professionals may consider focusing on treatment and services to improve quality of life for their young patients with spina bifida;
- Children and young people with spina bifida reported improvements in their social well-being over time. Their physical and psychological health remained stable. Youth with spina bifida may adapt to their health condition; and
- For both time points, parents of children with spina bifida reported lower social and physical health-related quality of life for their children compared to what the children reported themselves. This means that children with spina bifida may adapt to their limitations and that the parents of children with spina bifida may compare quality of life to that of other children and siblings without chronic conditions.