personal stories

When you, or someone you know, is facing a health challenge, nothing hits quite as close to home as the experiences of others. Personal stories provide opportunities to learn, laugh, and look at things in a refreshing new light. Continue below to read personal stories from kids with hydrocephalus and their families.


My niece has hydrocephalus and since I am also a first grade teacher, I find it really important to know how to react with these kids whenever they don't feel well. I found great information about that on HydroKids and also contacted the Hydrocephalus Association. They have a brochure explaining pediatric hydrocephalus and even one called "Hydrocephalus - a teacher's guide" which was a great read for me!
-Tracy, Madison, Wisconsin


My name is Laura and I am 12 years old. My parents told me that I was born with hydrocephalus, a condition causing too much water to be stocked in the brain. It's not really water, but it's a liquid that everyone has in his brain and spine. However, in mine, there was too much of it. That is why my doctor decided to put a shunt in my head when I was a baby, so that I could live a normal life. I had to have several operations since then, because my shunt needed to be replaced. I once had a really bad infection in my brain, and I had to miss school for a while, but fortunately everything went well. After that, my doctor used the orange shunt, saying that it would help against the bacteria, and also put a programmable valve.


Jose and Katie gave birth to a little boy two years ago. They were very worried because Carlos came 6 weeks early and a couple of hours after his birth, he became abnormally quiet. The doctors quickly diagnosed a bleeding in his brain (intracranial hemorrhage). This bleeding had to be evacuated through drainage, but the doctors quickly said that he was at risk for developing hydrocephalus. Because there is no drug that can treat hydrocephalus, a shunt had to be implanted in Carlos' tiny head. He is doing fine and his parents bless everyday with him. They met a lot of parents in the same case and felt lucky for getting so much support.


Through the Hydrocephalus Association, we have met many people going through the same challenges that we are experiencing. Our young daughter has even developed friendships with children her age that have hydrocephalus. We have gained a wealth of knowledge from their conferences. The Hydrocephalus Association's resources helped us find the right neurosurgeon for our daughter at a critical time in her care. We will always be grateful for this. I cannot imagine facing this lifelong condition without the Hydrocephalus Association. They have provided us with the resources, support, and education to expect a bright future for our daughter. -Natalie, Kansas City, MO


When the diagnosis of hydrocephalus was given the world became a scary place not only for us, but for our child. The Hydrocephalus Association helped to ease our fears and let us know that although the diagnosis was unnerving, we were not alone. Talking with specialists and other parents through the workings of the Hydrocephalus Association helps more than words can say. We appreciated the support when our daughter was diagnosed, and do even more so now sixteen years later.
-Debbie, MO


Talking to other parents of kids with hydrocephalus through the Hydro- cephalus Association helped me realize that we weren't alone with our daughter's diagnosis of hydrocephalus, and that there was hope for her having a full, productive, good life

Before the group I had never met anyone who had hydrocephalus or a child with it, so I didn't know much about it, and the medical doctors and nurses explanations' are not as realistic as talking with people who actually have it or have children with it.
-Carol, MO

Local Resources

Helpful Links

Did You Know?

one of four cavities found within the brain where CSF can be accessed