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.
