Featured CDHer~ Tracey

 

My name is Tracey and I am a cdh survivor. I am 33 years old. Back in 1980 I was born with a left sided cdh. I wasn't breathing so I was life flighted to another hospital. I went through 12 hours of surgery and given a 40 percent chance to live. I was given my last rights several times and they had to bring me back once also. I had a breathing tube put in my left side because my lung collapsed. I was put on oxygen and stayed in the nicu for 4 months. When I came home I was still on a feeding tube until 6 months. I managed to live a pretty normal life. I have had 3 healthy children and 8 surgeries to correct problems from my anatomy being a mess with my most recent open abdominal surgery to remove my appendix which was attached to  my spleen. Also my doctor removed a lot of adhesions and tried to rearranged my malrotated intestines. All of my large bowel and colon was  on my left side and all my small bowel was on my right side. I also have a kidney that is upside down. My liver is in the center and looks like I have two of them. Everything works correctly so I guess I can't complain. I keep on going and take one day at a time. To all of you who were born with cdh never give up. I have made it this far fighting and so can you!

~Tracey

Featured CDHer~ Courtney

Courtney

Hi my name is Courtney I am 23 years old. I was born May 24, 1989. My mother found out about my Cdh birth defect at her 12 week ultrasound. This was a very new birth defect to doctors at the time in Springfield, Mo. I was born via c section and immediately was rushed into surgery to repair my hernia with a patch. I stayed in the nicu until mid July. My Cdh caused some my left lung to not fully develop. My mom soon realized I could not hold formula down well. When I was about 5 I started choking. My earliest memory was when I was 7 years old and choked on a piece of chicken my mom rushed me to the er and I had to be put under to get the chicken pushed through to my stomach because it was so wedged in. About the same time I started going to my Pulmonologist (lung doctor) to have breathing treatments done, and they referred my mother to a Gastro doctor at the children's hospital in st.Louis,Mo because I was choking every time I ate. At the time in Springfield they did not have a children's doctor for this. We made the 3 hour trip when I was 8 years old and I had my first scope done. We found out that my esophagus was 5mm around and it was supposed to be 30mm around. They immediately stretched it with a balloon. I had to go back every 6 months they stretched it every year. I then found out o have gastroenteritis reflux disease. I started off on Prevacid one a day but I was having so much acid they kept raising the dose. They monitored me once and I had over 200 separate episodes of acid in one night. In school I had a inhaler for gym because I could not run long because of my lung capacity. By the time I was 20 I was on 6 Prilosec a day for my acid reflux. At 21 I got pregnant with my daughter I quickly found out 6 pills a day was against the federal recommended dose so they lowered me to 3 a day and they said that was safe for pregnancy. That was my only issue through pregnancy was my acid. I was so worried something was going to be wrong but I am happy to report that I had a healthy pregnancy and I now have a healthy 2 year old. I no longer have to go to my lung doctor, I just don't run for a long distance. I do see a gastroenteritis adult doc now and I had my last stretching a year ago and they said everything is looking wonderful. I only go back if I start choking again which will result in stretching. My esphogus is 25 mm around now and I can eat anything I want. There were times in life that I got very down and was very ashamed of my scar but I am finally accepting that it is my story and I am not ashamed. I never take a day for granted and am so happy to be here. I just want to give everyone some hope for their children. My mom will cry at the drop of a hat when it comes to my health so I definitely see the pain it causes but I just remind my mom I'm okay and I'm still here and so thankful. Just never lose hope.

(Here is Courtney and her daughter.)

~Courtney Boyce