How Living with Spina Bifida has Changed Over the Years

    Published: 06-16-2009
    Views: 11,703
    Donna Jones, a woman with spina bifida, talks about how living with spina bifida has changed over the years.

    Donna Jones: Hello, my name is Donna Jones. And I am an adult living with Spina bifida.

    Up to 90% of those born with the most severe form of Spina bifida also face life threatening Hydrocephalus. Hydrocephalus is characterized by an excess amount of spinal fluid on the brain which can cause brain damage or even death.

    It is often treated with the shunt which remains in place for life. Up until the late 1950s physicians recognize the negative impacts of Hydrocephalus on those with Spina bifida.

    However, attempts in shunting were only about 50% effective. Many children born with Spina bifida were not living into adulthood.

    When I was born in 1976, the doctors told my father I wouldn't walk, talk and most likely will not live very long. He told my father it was best to commit me to an institution so my parents could focus no raising my older sister.

    My father's reaction was to ask the doctor to leave and he began to investigate medical advances in Spina bifida. Three days later my parents had medivac to California where doctors put a shunt in place.

    Advances in shunt technology had increased the effectiveness of the procedure to merely 90%. Well my shunt has required some revisions, as you can see today I am walking and talking and I have a very successful career on Capital Hill.

    People with Spina bifida have careers, get married and have children just like people who do not have Spina bifida.

    I'd like to discuss with you next, what are some of the challenges of living with Spina bifida today.