My son Alex suffers from hydrocephalus, an uncommon condition that forces an abnormal accumulation of fluid inside his brain. His condition is treated with insertions of shunts into his skull to let the excess fluid drain. If the shunts should fail, Alex could lapse into a coma and even die. Quick and appropriate intervention for my son and other hydrocephalus patients is critical.
Since Alex was diagnosed more than 20 years ago with his condition he has had endless encounters with the health care system. Between ages 6 and 16, Alex had some 20 surgeries, most to replace or repair his shunts. When he was 7 Alex wasn’t playing baseball, he was receiving hospice care.
But Alex is a survivor. There are many people, doctors and caregivers to thank for this, particularly one man who was willing to look at a problem in a different way. Because of this man, a bio-engineer, I didn’t lose Alex when he was a child in hospice care. That, in turn, spurred me to challenge the status quo.