The Will to Run:
One Man’s Journey through Hydrocephalus and Pfeiffer Syndrome
My name is Wesley Junior Batson. I was born in the Bronx, New York. When I was born, I would be a miracle baby because of many complications. Shortly after my birth, I was diagnosed with Hydrocephalus, a condition where there is water in the brain. As a result, I had a Ventricular-Peritoneal Shunt (VP) put in to drain the water out of the brain. I also have Pfeiffer syndrome.
Every time you looked around, I was going in and out of Montefiore Hospital for surgery. Shortly after the surgery, I resided at St Mary’s Hospital for Children for four and a half years.
Every time I had an operation, I was terrified and would refuse to go in unless my dad was there. I have had multiple surgeries, but the three crucial ones were facial reconstruction, shunt revision, and maxillofacial advancement. For all of my young life, I would go to appointments to discuss the possibility of having facial reconstruction but never thought the day would come.
But in 2004, I went into facial reconstruction surgery. Afterward, I would be sedated for two days in the Children’s ICU. I had screws put in back of my head to help advance the midface, which was very painful. As a result, I had to miss school for the remainder of my freshman year. Shortly after tenth grade, I went back into surgery to get the screws removed and was able to go back to school.
Everything was going well until someone at school noticed I was bleeding at the top of my head one day. I was sent home and rushed to the hospital by my parents. There, it was discovered that I had an infection from the artificial bone that was put in to help smooth my head. This meant that I had to be operated on again to try and correct the problem.
Keep in mind that during this time, my family and I went back and forth to the plastic surgeon constantly because I wasn’t getting any better. Finally, my parents had enough and took me to the neurologist, Dr. James Goodrich. He took one look at me, and before you knew it, I was in surgery and the problem was corrected! I was put on medication to help get rid of the infection. But that was an ordeal I’ll never forget.
After that, I thought it would be smooth sailing. But one day in my senior year of high school, I started developing unusual headaches on a regular basis. I kept trying to play it off until one Sunday, it was discovered that I was in critical need of medical attention. So, my dad took me to the emergency room, and we sat there all day. I was taken in for a CT scan but vomited during the examination.
Later that evening, the doctors told my dad and me, “Wesley, your shunt has a kink in it.” I looked at my dad and started to cry because I couldn’t believe what was happening to me. That night, the doctors came and did a shunt tap. The next day, I was in surgery. That whole week was an ordeal going in and out of surgery as I was unable to eat. Finally, the problem was resolved, and I was sent home to recover.
I was able to graduate high school on time. In the summer of 2008, I had maxillofacial surgery to advance my jaw and was put on a soft food diet for a few weeks. That was very painful, but as I look over my life, I know I have a testimony! As a kid–and even now–people made fun of me without getting a chance to get to know me, judging me on my looks and disabilities. I have learned to have a big heart, and I would like to share it with you.
If it were not for God, I wouldn’t the man of God I am today. I am still struggling in areas of my life, but I hope this testimony helps you understand a little more about me.