Genesis Espaillat is a Florida International University PantherLife senior and a member of HA’s Teens Take Charge Program
Below is her first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month. This is reprinted with permission from the online journal of Florida International University News.
By Genesis Espaillat
What are some things you can’t live without? Coffee? Caffeine? Your smart phone? For me, I cannot live without my shunt.
My mom has always told me that ever since I was a baby I had trouble with many things. At the age of 5, she had sent me to the Dominican Republic where my grandparents live so they could take me to see a specialist because here in the United States, even though I was born here, I could not see a specialist due to the fact that I wasn’t able to get a referral from my primary doctor. While I was there, my grandparents took me to go see a neurologist because they saw my head a little larger than a usual person. I also had a lot of coordination problems, my hands and legs would always shake. Based on that, the doctor sent me to go get an MRI done. The results of the MRI showed that I had hydrocephalus and a brain cyst. The doctors said I most likely was born with it – it was congenital.
The results were brought back to the United States, and my mother showed the images to my pediatrician who referred me to a neurosurgeon at Yale–New Haven Hospital. I was admitted that same day and had surgery the next morning. The date of my first surgery was March 27, 2001, for hydrocephalus and while being in the hospital, I turned 6 on March 29. My next surgery was March 31st to remove my brain cyst.
After the brain surgery I had to start all over again. It was like I was reset. I had to learn how to walk, I had to be potty trained again. Complete rehabilitation. It took over about a year and a few months between wheelchair, walker, physical therapy and occupational therapy. Also dealing with hydrocephalus has affected my long- and short-term memory, but as the years have gone by it has gotten a bit better. As a little kid I had to learn how to limit myself from doing things a regular child my age would do such as running, jumping, climbing and doing other physical activities. Today my VP shunt needs to be constantly evaluated by medical professionals. My eyesight has been affected because of the pressure of the fluid that was built up in my brain, and I now wear glasses. My balance and coordination are still affected. I also have a learning disability. However, I have learned how to cope with this condition throughout my years of living with it. It hasn’t been easy, but I have tried to get other people educated and have tried to find ways to spread awareness because not many people know about hydrocephalus. If there is one thing I wish people knew about hydrocephalus, it is that hydrocephalus is a medical condition not a disease. There is currently no cure. More research and awareness are important for those living with hydrocephalus.
I have been very passionate since high school about spreading awareness on hydrocephalus. September is Hydrocephalus Awareness month. My first day of high school I experienced a horrible headache, and I knew it wasn’t a normal headache. I ended up having to go to the hospital and have surgery the very next day because I had a shunt failure. Without this shunt, I will die. This is something I cannot live without. I am very thankful for my shunt because it keeps me going.
HA Resources for Teens & Young Adults
If you are a teen or young adult living hydrocephalus, or a sibling or friend, we encourage you to check out the Hydrocephalus Association’s Teens Take Charge (TTC) program.
Teens Take Charge (TTC)
HA has created a teen and young adult portal which serves as a place of information and empowerment for youth. Learn more about the resources available by browsing the different pages. Consider this a virtual hangout spot and please email us with suggestions and ideas! HA has also created a place for teens and young adults (ages 12 to 25) to talk via Facebook and Twitter; go check it out! Join us and help create a community of young adults making changes happen!
If you are interested in learning more about the TTC program or would like to become more involved, please contact Megeen White.
Publications and Online Resources
The Hydrocephalus Association has a number of useful resources and publications for teens and young adults. If you haven’t already, we hope you have a chance to read these publications and visit these other organizations online.
HA Publications and Resources
- College and Hydrocephalus
- Health Care Transition Guide for Teens and Young Adults with Hydrocephalus
- Trending Topics for Teens and Young Adults
- Community Voices
- Hydrocephalus Association Scholarship Program
- Hydrocephalus Resource Library (HRL)