Tuesday, March 26, 2013

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

8 comments:

Annette Long said...

Courtney, I can so relate to your story. I have a 25 years old CDH survivor daughter and she has a 2 year old son. We taught our daughter from early on to embrace her scars, to wear them proudly, because you are alive because of them! She to has problems with reflux. I can identify with your mother. It is still hard on me, I always worry about her (much more than she does herself)!
take care and wishing you the best! Your daughter is a cutie!!!

Anonymous said...

Thank you!! Brings tears to my eyes just seeing the "hope" there is.....momma of twin with rcdh

Anonymous said...

Thank you so much for sharing. My little girl has CDH, and has been going in for x-rays every two months since birth(she's 10 months). She's doing very well physically, but I'm concerned about long-term effects of her repeated exposure to radiation. A nurse practitioner friend of mine told me that her fertlity could be affected. I assume you had many x-rays growing up too? I'm so happy to see that you have a beautiful daughter, and are able to live a normal life!

Mary Lou said...

Courtney....
Hi. My name is Raelyn, and I appreciate your story on a profoundly personal level!! I, too, was born in the '80's with CDH. I am now 29 years old. I did not realize that they were surgically placing the patch back then, as medical research is constantly evolving. Interesting. Children who were born with CDH are unique as a zebra's stripe pattern, as no story is exactly alike. My childhood was easier than yours. I am glad that you are a survivor, an adult Kindred Spirit CDH Friend!! You're an inspiration. ;)

Anonymous said...

First of all let me tell you dear Courtney..,your daughter is a cutie pie.Thanks for sharing your story with us.Heard a lot about Congenital Diaphragmatic Hernia.Its very sad that small kids have to suffer from such types of hernia.Great blog!

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Unknown said...

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Unknown said...

Your scars are proof you beat CDH. Wear them with pride.! My 16 year old son shows his off.