“If I Ever Get Out Of This Place”
Helen O’Toole is a long-standing member of the Hydrocephalus Support Association who spoke at our HSA Conference November 2025 about her Hydro journey and eventual ETV operation (Video available on HSA website).
Helen has recently published her memoir, If I ever get out of this place”, detailing her experiences as a teenager coping with Hydrocephalus and multiple brain surgeries
If I Ever Get Out of This Place, is Helen’s memoir about her teenage years navigating a chronic illness and high school. Helen got sick when she was eleven, and the only treatment at the time was a medical device implanted in her brain. But it kept failing. By sixteen, Helen had been through twenty brain surgeries.
Worse than the brain surgery, was that they shaved Helen’s hair for each operation. She hid under wigs and beanies, but the bullies at school always knew.
Helen promised herself if she ever got out, she would live her life fully.
Then her doctors offered her something new – a procedure with no device! For the first time in a long time, Helen felt there was real hope for the road ahead. The operation was new, so it was a risk – but it could be her last surgery.
Helen said YES and was one of the first people in the world to have the operation. It changed her life.
For anyone interested in finding out more about Helen’s inspirational story, her book launch will be at Gleebooks in Glebe, NSW, next month. Copies of the book are also available for purchase on Amazon