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.
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