The life expectancy for babies born with spina bifida (who often also have hydrocephalus or “water on the brain”) has risen considerably over the past few years because of improvements in medical care.
Now a large number of people with spina bifida have reached adulthood, and after a relatively uneventful period in medical terms, those in this group again find themselves regularly confronted with other medical problems. According to PhD candidate Hans Barf, it should be possible for these young adults to go to doctors and other health care professionals who work together to provide them with specialized care. This should focus not only on medical care, but also on helping them function as independently as possible as members of society.
A person with spina bifida can be affected by a great many problems, like having to be in a wheelchair, incontinence, pain, and learning difficulties. The degree to which these problems are present varies significantly from person to person. New issues also start to play a role in their lives, things like education, living arrangements, employment, friends, and having a partner and possibly also children. Barf came to the conclusion that a severe form of spina bifida does not necessarily lead to a lower quality of life. Conversely, young adults with a milder form of the condition also have problems, most likely because they compare themselves to healthy people their own age.
Hans Barf will receive his PhD from Utrecht University on April 29. The title of his dissertation is “Spina bifida: implications for cognitive functioning, disability and health in young adults.”