How has the lifespan of people with spina bifida changed over the decades?

Embargoed until: Publicly released: 2026-06-16 01:00

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The lifespan of people with spina bifida has improved over the past 70 years, but not any faster than the general population, according to international researchers who say there is likely much more to be done to improve health outcomes for people with the condition. Spina bifida is a birth defect impacting the development of the spine that often leads to lifelong mobility issues. The researchers identified 942 people living with spina bifida in the US from 1950 to 2020, and compared their mortality rate with 9420 unaffected people matched by birth year, sex and residential area. The researchers say survival in the spina bifida cohort improved in parallel to the general population over the decades, but survival remained 24-fold worse during infancy down to 8-fold worse in their sixth decade of life. The researchers say this suggests the improved life expectancy of people with spina bifida may be mostly as a result of general healthcare improvements - especially in infant mortality - rather than specific spina bifida care progress and people with the condition likely still have unmet healthcare needs reducing their lifespan.