Monday, January 4, 2010

It's 2010 and still so many people don't know what CDH is

It's been quite a while since my last post. I think about posting often, but rarely feel I have anything interesting enough to share with the CDH world. I try to stay current with all of the many CDH families I follow. Hundreds of families in fact. By following their stories, I'm still a part of the CDH community somehow. Reading about the struggle, the heartache and the all too many CDH warriors that have earned wings this year, it's hard to write about how our CDHer is defying his odds, his less than 50% chance of survival odds.

Our son was diagnosed with CDH at 20 weeks. We were given bleak if any hope that he would survive the third trimester. Everything that was supposed to be "down" below his diaphragm was up in the chest...how in the world could that be? It was as if I was stuck in some weird sci-fi movie. I kept telling myself, "this is a dream." We were being prepared by our medical professionals for the worst, for the death of our son. It was opposite of what was supposed to be happening. They were supposed to be preparing us for birth, the choice between meds/no meds and talking about 10 fingers, 10 toes, etc. We were supposed to be sharing our ultrasound images with family and talking about that little fuzz being hair and wondering if he would have my eyes and Barry's chin. But instead we were explaining to family members where the organs were on the image and how this was not a normal picture. It was not a dream, it was happening and we had to get on board and make decisions that ultimately I believe saved our son's life.

This was 2 years ago now and it seems like 10 years ago. It was so raw, so real at the time. I remember crying privately a lot but putting on a brave face in public. I remember looking at books that chronicled the development of a fetus and getting so mad that there wasn't a book like this for CDH parents with images of what their child looked like, organs out of place but happily floating around in uterine bliss.

We are ok, we lived this ordeal and our son survived it. He is a living breathing miracle walking around for everyone to see. I am never going to be able to say thank you enough for my miracle and I'm blessed to have a miracle in my lifetime.

Now to the future of CDH...what I see is a world where all CDH parents have a support system, education, resources, and tools to make the best decisions about care. I see a world where research for CDH is happening all over the world not just in select hospitals. I see a world where my son doesn't share a scare with thousands of other CDHers. I see a world where CDH is synonymous with Cystic Fibrosis, with Spina Bifida, with Leukemia. I see a world where CDH doesn't happen anymore because we identify the root cause.

I know there are many CDH parents out there that are making a difference. Many of them have lost babies and many have survivors, but regardless they are committed to changing the face of CDH. The CDH community can work together to make this happen and I hope 2010 a year of real change for CDH.

4 comments:

  1. I feel the same way about Gabi.. she is our miracle! It is so hard to read about those who have lost their precious babies. It seems like I read more about loss than survival. I am at loss sometimes.. we Really do need to make an impact!
    Thanks for posting!!!
    Joanna

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  2. I feel I do so little, but I know that in the long run everything helps. I was just at a lunch meeting today and told 5 other people about CDH. None of them had heard about it before today and now they know. I talk about it whenever I can and to whomever I can!

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  3. Hello I'm CDH Mom to Ava. I just happened upon your blog. Great job with awareness by the way. Jax sounds like a very strong little feller! I always like to remind new CDH parents about the dangers of reherniation. I know it is probably on your mind like it was on mine. Ava was also treated at CHOP. Her surgeon told us there was little change of the patch breaking. Oh how wrong they were! At 25 months she became very sick. She had done something very bizarre. Her gortex patch that was placed at birth somehow got digested by her small bowel causing a total bowel obstruction. She went through the wringer with this and we were faced with losing her again. It was bruital. I don't say this to scare you only to let you know. I did some research while in the hospital and the statistics are 60% of kids with patches reherniate by the age of 3. THAT is a very high number! If you'd like the signs of reherniation you can get them on our site for Ava. If you ever want to chat I'd love to hear from you. I also felt survivor's guilt after Ava's first initial hospital stay. I no longer due as I realized when she reherniated none of us know our future so why be sad to be alive.

    Keep up the good work with Jaxson!

    ~Terri and Ava Helmick

    http://avaslifewithcdh.blogspot.com
    http://cdhawarenessvideos.blogspot.com
    mycdhlife@gmail.com

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Welcome Jaxson's CDH Journey

Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.

Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.

He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.

He is our CDH rock star!