March 3 - Dear Nicholas Sparks (Guest Blogger Cassandra Carter)

Hi Mr. Sparks,

My name is Cassandra (Casey) Carter. If you saw me on the street I would seem like any other normal adult who might be a little too loud. What you would not see from just looking at me is that I am my parent’s miracle child. You have read both of their stories in earlier posts. What you would not see are the two large scars I have, one right under my left rib cage and one that goes right down the middle of my stomach. What you would not see is how lucky I am to be able to call myself a fighter and survivor. What you would not see is that I am able to bring hope to other parents. The reason being, I am a 28 year old left sided CDH (Congenital Diaphragmatic Hernia) survivor. This is my story and journey from my view with CDH. Of course, I don’t remember my birth, but I do know me and I can be somewhat dramatic. So I know that I needed to make my entrance into this world a big one and believe me, it was very grand and dramatic but not in the way it should have been. Here is my story.

Growing up, we all ask to hear different stories and normally it is our favorite one. Well, I would do the same thing only this story was about me and my fight for survival when I was born. Every year on my birthday, I would always ask my mom to tell me my miracle story. She would tell me how special I was because I only had a 5 percent chance of survival. See, I was born with a hole in my diaphragm and some of my abdominal organs were in my chest cavity. I ended up having to have surgery when I was 3 hours old and ended up being in the hospital for only 11 days, another miracle, as most baby’s hospital stays last for weeks or months. During that time I had to fight to live, it would be my biggest battle I have ever had to do. Looking at the pictures they had of me, which are many, because I have always loved to have my picture even with all the tubes and wires and what not, I would ask about all the tubes and different things that were attached to me. One of these things that I always found funny was a little paper cup on my head. You may be wondering why. Well let me back up a bit I was born on Dec 30th right before New Year’s Eve, so my dad could get a tax write off. So I would always ask about the cup on my head and my dad would say don’t you know that was your party hat for the New Year. I thought that was so funny. I still think it is, I am laughing right now while thinking about it. I had it there because I kept trying to take out my IV. Then after what my mom calls the longest 11 days of our lives, they were able to finally bring me home. Though I did end up having to have more surgeries later on due to my original surgery at birth. I had one when I was 18 months old and one when I was 23 years old. Both surgeries were due to bowel obstructions caused by scar tissue. Now if you ask me the one from when I was 23 years old was soooo more painful. I also have asthma, dyslexia, and ADD which we don’t know if that is from the CDH or not. It seems that many other kids with CDH also have these issues as well.

Now growing up hearing my story was AWESOME because I knew it made me one lucky kid/ adult to be alive. So I never had an issues showing off my scars to people whether they wanted to see them or not. I do remember one time when someone else had an issue with it. I was at a water park around middle school age and this girl about my same age asked me why in the world I would wear a bikini with such ugly and big scars on my belly. So I looked at her like she was crazy because I did not know who she was or what she was talking about. Because to me my scars are not ugly. My response, which may have been overly dramatic, because that’s me, I told her without them I would be dead, so I am quite partial to them and love them. They make me who I am. I told her my story then. I then watched her jaw drop. She was very impressed that I embraced them rather than hid them from the world. I still do.

Now we fast forward to 5 years ago. After my last surgery, my mom started researching about CDH affects adults online. That is where she found CHERUBS. Almost two years after that I was able to go to DC and meet many people in my CHERUBS Family. It was amazing to be able to talk to and hear other CDH stories and meet other survivors, although I was one of the oldest there. Since then I have been able to attend several other functions with CHERUBS and have become one of the Co-Reps for Texas. One thing you will learn fast is each family’s story is different but they all know what you’re going through or have gone through.

So I am asking you Mr. Sparks, please help us to show the world how strong and how hard these babies fight. I know how hard they fight and how strong each and every single CHD baby is. I lived it. We would be forever thankful if you could help us spread awareness. 

Sincerely,
Cassandra "Casey" Carter
CDH Survivor