Featured CDH International’s Patient of the Week is Taylor Miles. Taylor is an adult CDH survivor and she had this to share about her journey with CDH:
“I was born on September 21, 1995 in Tuscaloosa, AL. I was 36 weeks, just a little early. My momma said I came into this world blue and not making a sound. Within an hour of me being born, I was being transported to Children’s Hospital of Birmingham, AL, about 45 – 60 mins away from Tuscaloosa. Children’s was waiting for me. There I was pretty much immediately put on ECMO, it was a struggle for them at first. My veins were really small, but they were able to successfully connect ECMO to my right jugular vein. I’m not sure if it was at my home town hospital or at Children’s that my CDH was discovered. But nonetheless, I was born with right-sided CDH, but I was a little different. In my case, instead of a hole, I had no right diaphragm what so ever. I was on ECMO for 10 days. At the end of those 10 days, my Dr’s talked to my parents and basically gave them two options: take me off ECMO and let me go, or try surgery and have a 50/50 chance of survival. So, my parents chose surgery. My doctors made me a patch “diaphragm” out of a mesh material. My first patch ended up busting so I needed my first repair. My doctors thought my patch busted a 2nd time, but turns out it was a false alarm. Although through the process of that surgery, my liver ended up being cut and the surgeons had to stop the bleeding in my liver and sew it up. Through all of that, my right lung never developed, and I have a small left lung. I was in the NICU at Children’s for 3 months.
My parents brought me home with an NG tube and I was tube fed every 4 hours for 4 months.
I also have a chest deformity called pectus excavatum, it’s where my chest is caved inwards, I was born with this as well.
I was brought home on oxygen that I wasn’t able to be weaned off of until I was a little over 2 years old.
I also received a prophylactic drug for RSV for 14 months, and on my 13 month check-up, I tested positive for RSV!
I attended The RISE School founded by Gene Stallings in my home town of Tuscaloosa, AL. They were the only place with open arms for me. I attended the school from 5 months old to 5 years old.
When I was 2 years old, I was diagnosed with scoliosis, I had a 60 degree curvature. For the next 6 years I was seen by multiple orthopedic doctors, some in my hometown, some my parents and I traveled out of state to go see. I went through different back braces, medications, and tried physical therapy, nothing seemed to work. I was 8 years old when I had my first spinal fusion, back at Children’s Hospital. I was 13 when I had my 2nd fusion. Both surgeries I had to go home on oxygen because I just couldn’t be weaned, but I was able to finally let go once I got home.
I grew up a “normal” childhood. I played with my friends outside, tried to play sports, but wasn’t athletic! Instead, my hobby was music. I joined The Alabama Choir School when I was 9 years old, it was difficult, because I get short of breath VERY easily, but I had to train myself my own way of choral singing, and it worked for me! Through music, I was able to achieve a college scholarship for 3 years and I traveled to NYC two times to sing in Carnegie Hall!
Today, I’m almost 25, I’m an ICU nurse in Tuscaloosa, AL. I’m planning a wedding with an Emergency Department nurse that I met during nursing school! We both plan to move to Birmingham, AL for our nursing careers. My dream is the work in the Pediatric ICU at Children’s of AL so I can go back “home” and I can be ECMO certified and bring it back full circle!
CDH has actually changed my life for the better. My “normal” is a little bit different, but that’s okay! I wouldn’t be who I am today, if I wasn’t born this way!”