Hello my name is Donna Jones and I’m an adult leaving 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 food in 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 1950’s positions recognized the negative impact of Hydrocephalus on those with spina bifida. However attempt with shunting for only about 50% effective. Many children born with spina bifida where not living into adult hood.
When I was born 1976 the doctors told to my Father I would not 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 on rasing my older sister. My Father’s reaction was to ask the doctor to leave and begun to investigate medical advances in spina bifida. Three days later my parents had me back to California, where doctors put a shunt in place.
Advances in shunt technology had increase the effectiveness of the procedure to nearly 90%. While 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 Health.
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.
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