Diagnosed at 1


Story Written by Author/Self

I acquired hydrocephalus at birth. However, it did not become apparent until I was a year and a month old. Beforehand, it was just believed that I had an abnormally large head. One day, I fell ill. My parents took me to the hospital, and doctors and nurses began to run tests. With initial findings, the doctors believed that I only had a case of pneumonia.  However, treatment did not that was being implemented was not working and the doctors became stumped.

Because of this, they eventually brought in a neurosurgeon, by the name of Dr. Nedalton Payne. From my parents’ account, the minute this Doctor, who I will forever remember, entered the room, all others stepped back to let him look over me. Immediately, he knew I had hydrocephalus.

From there, I was taken into surgery after more tests to confirm the diagnosis. During the surgery, three shunts were placed in my head and a “truck load of tubing” in my abdomen for years of growth with no problem.

Up until I was eight years old, I was doing great; there were no problems and a good life. Until one night. I was laying my bed during the middle of the night when my head began to hurt more then I had ever imagined. The only way I could describe it is like two anvils squeezing my head on each side.

My parents immediately knew that they needed to take me to the ER. I remember getting there; being put in a side private room and then beginning to run tests. After a while they realized it was time to operate.  From then on, over the course of about 6 months, from the fall of  ‘92 to that winter around Christmas time, I was in the hospital on and off.

During this time, I experienced the love of everyone in Northside Hospital in Atlanta, Georgia all the way to my last revision (for a total of two). I received my MOST WANTED FAVORITE toy from a marine.

From that last surgery at the age of eight, I have been in great health. I am 30 years old, and I haven’t had problems with it since my last revision (minus the irritation from scar tissue in my abdomen )

When I stumbled, and I mean stumbled, upon the Hydrocephalus Association’s WALKs two years ago, I was going through a very hard time. One day, in order to relieve a little bit more stress after working out, I decided to go walk at the park. Half way through my walk, I started noticing all of these signs about hydrocephalus. Then people with shirts with hydrocephalus on them started showing up.  It freaked me out. NO ONE knows about it, so I went on the internet and tried to find out if there was a walk. Sure enough there was.  Since that day and reaching out to the coordinator, I have been using my education in photography to photograph and document this walk every year so that the word can be spread.  I love the fact, that I can help people young and old see that things can and will be okay.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: communications@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Visit our Advocacy Action Center.