My name is Brittany and I wrote this when I was 9 years old (Now I'm all of 17!), and one of these days I might update the story. 

My very best friends are my sisters Kelsie and Cassidy.  We do
everything together and what we love to do most is play outside and get filthy dirty!  I always have to remember when I play that I have a shunt...my sisters forget sometimes too.  I miss my sisters most when I am in the hospital. 

I'll bet you're wondering what a shunt is and why in the world I have to go to the hospital. Here's the scoop:

I have hydrocephalus, a word that means water in the brain. It's not actually water, though, that builds up in my head.  It's really called cerebrospinal fluid (csf for short), and all of us have some of it. 

This is what happens. As I mentioned, everybody has some fluid in their head. This fluid is like a river that travels all over the brain and up and down the spine. Kids who have hydrocephalus usually have a barrier somewhere that stops the fluid from flowing smoothly, sort of like a dam in a river. Because of this, the fluid builds up until there's so much pressure, it causes a headache and all sorts of other problems. 

Luckily, there are operations doctors can do to stop the pressure. They can put a tube called a shunt into the brain where the pressure's backing up, and then thread it around the barrier, out of the head, and into the heart or the belly where it can drain.  I have a shunt that goes to my heart right now, and I've had over 50 operations to keep it working the way it's supposed to. Most kids do not have that many! No wonder my mom says I have a multimillion dollar head. 

My shunt has problems like infections and disconnections. It also gets clogged up sometimes, which is not good...my doctor calls it bad plumbing.  When my shunt is not working right I have very bad headaches.  I also developed an allergy to latex from all my surgeries.  If I am around anything made of latex--stuff like balloons--I swell up like one and break out and itch. 

Hydrcephalus hasn't stopped me from being a normal kid.  I have 2 horses: "wild tiger" and  "chase".  I have to wear a helmet when I ride to protect my head.  Even though I have to be very careful,  I still have lots of fun! I love to take care of the horses. I brush them and feed them apples.  We got the idea by reading about kids with handicaps riding horses called therapeutic riding and now it is a  big part of my life.
 
I want to be a neurosurgeon when I grow up so I can take care of kids like me.  Since I have been in the hospital so much and my mom is a nurse I have learned a lot by watching and asking questions.  I know some sign language, all the names for the bones in the body, and I am learning  about the muscles (though they are a little harder).  I love to get on my computer and look up medical stuff and read about other kids with problems.  I try to read my mom's medical books but they are often too hard for me to understand. 

The best thing about being me is that I get to buy cool helmets to protect my head when I do things like ride my horse. 

The worst thing about being me is having all those surgeries, having my head shaved to keep the operation area clean, and being away from home so much while I'm in the hospital.

Going to school is ok, though I cannot do all the fun things my friends get to do.  I cannot go to parties either, because most parties have balloons. If I were in charge of the school I would not have balloons and erasers and latex stuff at school.  The more I am around them the worse I get. My class mates usually don't tease me but they do say sometimes that I have a tumor in my head.  That does not make me feel good. 

My close friends know all about my head and they help to keep me from getting hurt. I can share secrets with them but the one who understands my problems most is my e-mail friend Jenni with the same problem I have.  She always makes me feel better.

I hope that you'll learn from my story that I'm a normal kid...and that you don't need to be scared of kids with problems...and you definitely don't need to tease them. At my school, I visited all of the rooms to meet the kids and help them know how to help me if I fall down or hit my head. They learned to get the teacher quickly! I think that makes them feel helpful. Everyone watches over me at school now so I don't get hurt. Lots of kids ask me questions and want to learn about it. 

Thanks for visiting my page. I hope that you'll write a note.

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: June 12, 2007