((Continues)) And a Survivor’s.

My name is Amy Schlueter. I was born August 4,1991 with LCDH. I was transported to Valley Children’s Hospital where I had the hernia repaired four hours after birth. Two months later, I had a re-herniation, which was repaired at Children’s Hospital Orange County. Today I am a 21 year old studying to be a Nurse.
Growing up, I played any and every sport I could sign up for. I have always loved being active and competitive. The only problem I seemed to have was that I could not keep up with the rest of my peers. Whether this be running during soccer and track practice or completing “The Big Mama” in elementary school. (This turned out to be a fun code the school made up for a mile.) I would start out completely fine, ahead of the pace of many of the others when suddenly, my chest would feel tight, breathing would become extremely difficult, and what I described as my “heart hurting” would begin. After the “attack” ended, I would quickly explain to everyone around that I only had one working lung. While I know that the breathing issues stem from the underdeveloped lung, I have never been able to receive a diagnosis to explain my random chest pains that occur during exercise and randomly during regular activity.
Ever since I could remember, I was embarrassed that I could not run as far or do as much as everyone else. Even today, I become frustrated and embarrassed. I find it unfair that I work out/run several times a week, and yet I still seem out of shape to those who see me struggling to breath. Even as an adult I have worked myself into such an extreme “attack” that I have passed out because I was too proud to slow down during my competitive soccer team’s practice. This, ironically, turns out to be more embarrassing than just admitting I couldn’t run as far as everyone else.
My greatest love has always been soccer. When I was young, I did not know how to read the signs of when an “attack” would come on. In practically every game, it seemed, I would have to be carried off the field by my coach because I could not breathe. I remember all the parents being so concerned about me and then my mother or father would come up to me and say, “you are ok, calm down, and get back out there!” One of my proudest moments, was when I was around 18 and I was able to play a whole soccer game without being subbed. A small accomplishment to many, but enormous for me.
Despite the doctor’s precautions, my parents never held me back. (That is besides track, they were just being realistic with that one.) Because they never held me back, despite my breathing deficiency, I had to learn how to not only prevent the “attacks”, I had to teach myself how to catch my breath after one. When I was a child and had temper tantrums, I remember crying so hard that it would turn into one of those “attacks”. Zero sympathy came from my parents however. They would let me settle myself down, get control of my breathing and then ask me, “Now was that worth it?”
Being born with CDH was never an excuse not to try. In fact, my parents never told me about the seriousness of this condition because they did not want me to ever use it as an excuse. During a college Anatomy course, I had a research paper due. This paper could be on anything having to do with human anatomy. Up until that paper, I had written every other anatomy based paper on Leukemia. I decided to research CDH and see if there was enough information to write a paper on it.
Before that day, I had always assumed that I was one of just a few this may have affected. The procedure seemed simple to me; a baby was born with a hole in the diaphragm and all the doctor would have to do is move the organs back, patch up the hole, and he/she was good to go. You can imagine my surprise when I found out the truth. It was as if I had discovered a whole new world. I was on the computer for hours that night absorbing as much new information as I could.
After my discovery of the CHERUBS, I felt it was my responsibility as a survivor to raise as much awareness as possible. I have vowed to never take my health for granted again. I am one of the few who has been able to grow up with very minimal health complications. I have now seen what many other families have to go through. 50% of these babies will not survive. While a portion of those who do survive, have to fight for life almost every day. My father recently told me, after I excitedly explained my future plans on awareness and fundraising, “This is exactly why you were spared; this is God’s purpose for you.” I have always known that I wanted to be a Nurse, I now hope to be able to work specifically with those effected by CDH.