A new long-term study offers important insight into how long people with open spina bifida may live, and how factors such as mobility, feeding ability, and bladder and bowel control can influence life expectancy.
Open spina bifida is a birth condition in which part of the spinal cord and surrounding nerves develop outside the body through an opening in the back.
Because the spinal cord is involved in movement and sensation, the condition can lead to a wide range of physical disabilities. Some individuals are able to walk and eat independently, while others require significant support for daily activities.
The research, published in the journal Developmental Medicine & Child Neurology, followed 1,659 people with open spina bifida who received services from the California Department of Developmental Services between 1986 and 2019.
This makes it one of the longest and most detailed studies of its kind.
The findings show that life expectancy differs greatly depending on the severity of a person’s impairments. Walking ability, feeding independence, and bowel and bladder continence were strongly linked to survival. Individuals with more severe impairments tended to have shorter life expectancies compared to those with milder forms of disability.
For example, at age five, boys in the most severely affected group were expected to live an additional 27 years on average. In contrast, boys in the least severely impaired group had a life expectancy of about 65 more years at that same age. By comparison, five-year-old boys in the general population were expected to live around 70 additional years.
The study also found that life expectancy generally decreased as individuals grew older, and males had slightly lower life expectancy than females across most levels of impairment.
The researchers say this is the first long-term study to provide life expectancy estimates broken down by age, sex, and level of disability for people with open spina bifida. They hope the information will help families, caregivers, and health professionals better plan for long-term care, support services, and medical treatment.
Although the numbers may seem concerning for those with severe impairments, the findings also highlight that many individuals with milder forms of spina bifida can live well into adulthood and even old age.
The study provides valuable data that can guide realistic expectations and informed decision-making for people living with the condition and those who care for them.
