June is Hydrocephalus and Spina Bifida Awareness month, so I decided to write about my experience living with both medical conditions. Hydrocephalus is caused by an abnormal build up of cerebral spinal fluid in the brain. It can cause permanent brain damage or be life-threatening if not treated but it is often managed with surgery to drain the excess fluid. Hydrocephalus can occur at any age and may be present at birth (congenital hydrocephalus) or develop later due to injury, infection, tumors or other causes (normal pressure hydrocephalus).
Spina Bifida is a birth defect in which the spine and spinal cord do not form properly resulting from an incomplete closure of the neural tube during early pregnancy. This condition can cause part of the spinal cord and nerves to be exposed through an opening in the back, potentially leading to nerve damage and physical disabilities.
Approximately 120,000 Canadians are living with hydrocephalus and about 85% of them have spina bifida.
When I was born in 1966, spina bifida and hydrocephalus were not well understood. The doctor in my small southern Ontario town of St. Thomas was unable to treat my condition and had little hope for my future. Undeterred, my parents sought expert medical care at Toronto’s Hospital for Sick Children.
There, I underwent critical surgery to close the opening in my lower spine.
A few weeks later, I had another surgery to insert a shunt in my head because I developed hydrocephalus. At one month’s old, my parents could finally bring me home where I met my three siblings: Karen, Michael and Rebecca for the first time.
Despite my frequent hospitalizations, surgeries and various treatments, I had a happy childhood and have fond memories of my birthday – which remains an important day, a reminder to honour life and health, because I’ve known people my age and younger who have died from these conditions.
I’m also grateful that my parents sought excellent medical care for me. Through their example, I’ve learned how to self advocate, ask questions and engage confidently with medical professionals.
Although I did not grow up around other children with disabilities, I am glad to now have a supportive community of friends with disabilities. Through them I’ve learned a lot and gained more advocacy tools. I share a unique unspoken bond with them, a deep understanding that I don’t have with others who do not have disabilities. I’ve also enjoyed adaptive sports like sailing and waterskiing through disability organizations and actively volunteer for Hydrocephalus Canada.
My mobility has changed over the past decade due to osteoarthritis in my knee – requiring me to use a walker for balance and a scooter for distance; however, I continue to embrace life fully.
I don’t know what lies ahead for me as I age — no one really does. But
I am confident I will be okay.
For more information, please visit: www.hydrocephalus.ca
