When I tell people that I grew up in a hospital. they feel sorry for me or think that I missed out on a childhood. But honestly, that just wasn’t the case for me. I was exposed to things at such a young age that I would have never been exposed to: culture, science, and, most importantly, the best medical treatment at that time. Hello, my name is Hodges R. Caldwell Jr. and this is my EB story.
I was born in August of ‘79 at Portsmouth Naval Hospital in Virginia. I looked pretty normal as a baby. When I was six-months-old, I got a blister on my right side. My mom kept taking me to the hospital, but the doctors said it would go away eventually. Of course it didn’t; it got bigger and bigger until it finally burst and it looked like I had been burned. My mom took me to many hospitals, but it was at Bethesda MD that I was diagnosed with EB. Unfortunately, that was all they were able to do - just diagnose me. They freely admitted they had no ideas on how to treat it.
Many of the doctors said I wouldn’t make it to two. My mother Jennifer, however, refused to accept that, so we traveled to different hospitals around the country. She was told about a dermatology convention in Washington DC where she met a nurse named Dorthea Caldwell (no relation). She told my mother about a research hospital called Rockefeller University Hospital and that they would be able to help.
When we arrived at Rockefeller, we meet my future doctor, Martin Carter. He explained to my mother that they had some revolutionary experimental treatments that could potentially help, but we would have to live in NYC and stay in the hospital. And that’s what we did. Literally, we lived at Rockefeller for over 4 years. I took part in some of the first new-age skin grafting, which was a complete success, and I was the first patient in the clinical trial for Bactroban ointment.
While I was there, I was home-schooled with excellent tutors. I had complete access to the labs. We were always going to the Brooklyn Zoo, different museums, and the opera, because that what Dr. Carter was into. We went with his family many times. And of course, baseball. We were always getting free tickets to Mets games, which is why I’m still a hardcore fan today.
So you see, growing up in a hospital really wasn’t a negative thing for me. And today, I still keep all the values that I learned as a child. I’m still doing clinical trials. I’m still heavily involved in the EB community where I try to be an example for the younger generation, because I understand the struggle and what they are going through. And yes, I even still listen to opera.
- Hodges R. Caldwell Jr.