Living with hydrocephalus

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One or two out of every 1,000 babies are born with a condition called hydrocephalus. I was one of those babies. A lot of times, hydrocephalus is called water on the brain.

Having hydrocephalus means that a part of me, inside my head, doesn't work exactly how it should. Everyone's brain produces a special, water-like substance that drains and gets absorbed naturally into our bodies. When someone has hydrocephalus, the water can't drain out. This is usually because there is something blocking its path, kind of like a clogged sink drain.

People with hydrocephalus do not look or act any differently than people without it. We play sports, dance, sing, draw and can do almost anything. However, I'm not allowed to go on some roller coasters, but that's OK.

When I was 2, the doctors told my mom and dad that I would need a special device called a shunt. A shunt is a small piece of plastic that helps drain the water out. My shunt doesn't bother me at all. Sometimes, I don't even realize it's there.

Sometimes, shunts can stop working. How can you tell when a shunt has stopped working? Well, I am lucky. It's only happened twice, and only one time that I can remember. When I was 5, I woke up with a terrible headache. When my parents took me to the hospital, the doctors took an MRI to see inside my head. My shunt needed to be replaced. A few hours later, I had a new shunt and was back to feeling much better.

Hydrocephalus is a lifelong condition because a cure has not been found yet. To learn more, visit hydroassoc.org

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