Congenital Diaphragmatic Hernia (CDH) is a severe birth defect that occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth.
CDH occurs in 1 in every 2500 pregnancies. This equals to a baby born with CDH every 10 minutes. Over 600,000 babies have been diagnosed with CDH since 2000.
CDH is as common as Cystic Fibrosis and Spina Bifida.
50% of babies born with CDH do not survive.
The cause is not known.
We had an amazing experience yesterday. For the first time in the 9 1/2 years since we've had a child diagnosed with a diaphragmatic hernia, we got to meet another set of parents that had lived through CDH also. This is Melanie and Josh Hensley. They have not 1, but 2 beautiful daughters that were diagnosed with CDH. Sadly, their story is a lot different than ours. Both of their angels were in the 50% of children diagnosed that it was fatal. They earned their wings and are watching over all of our CHERUBS from Heaven.
We met through CHERUBS on Facebook. Their family owns a vacation home in St. George, so they come down often. We made the promise that we would meet sometime.
Well, that sometime was yesterday. Josh and Melanie came to our house to visit and as soon as they walked in the door, I felt something magical. It was as if our souls were speaking to each other. A horrible, life threatening diagnosis that only the parents that have got this bad news would know how it feels. Randy and I knew that they knew how we felt and vice versa. Even though they have a different ending than we do, we had been through so much of the same stuff. Same hospitals, same beloved doctors, same rooms, same fears, same hopes, same faith and at times, the same heartbreak.
We talked for a long time about their stories and about ours. It was amazing to know that we didn't need to say a word, we both knew what we were feeling.
I hope that we were able to give them some hope. Tyler's story is remarkable. He has re-written medical books with his recovery. In Melanie and Josh's case, since they have had 2 CHERUBS, they have a 25% chance, every pregnancy of having another CDH baby. Not good. But there are good results out there to give everyone hope. Our story, Tyler's story. It needs to be shared and offer everyone with the CDH diagnosis a hope that good things can happen.
I can't finish this blog post without a big THANK YOU to Dawn Williamson and her son, Shane. Sadly, Shane also earned his wings and is no longer here with us on Earth, but because of Dawn's will to help and raise awareness, we have CHERUBS. Without CHERUBS, we would have been lost and there is no way we would have ever met Melanie and Josh. I wish Dawn knew how much she has effected our lives. She is wonderful. I love her with every piece of my heart.
I am so grateful for the opportunity to meet this wonderful family. I hope only the best for them and look forward to staying friends with them forever!!!!