Aril 19th - CDHawareness

I spent most of the day yesterday listening to a live CDH FB broadcast. The purpose of the broadcast was to raise money and awareness for CDH. They interviewed parents of survivors, grieving parents, pediatric surgeons from all over the world and a few celebrity spots. The majority of the time I was crying as these people spoke out loud many of the things we have lived through but never put into words. One mom describing the moment during her ultrasound when it went quiet and she knew something was wrong. A mother whose doctor pressured her to terminate and she chose not to. A dad describing how hard it was for him to be working while mom was at the hospital with the child. Another family rejoicing in all of the things their child has done that the doctors told them they would never do. And mostly a lot of frustrated people who don't understand why CDH doesn't have the same kind of backing as MS and spina bifida, even though the same amount of children are affected by it. In some countries like India, birth rate is much higher and 1 out of every 2 babies are born with CDH! I listened to a grieving mom desperate to have more advancement in her country, they have the facility and resources but no pediatric surgeons to save these babies. But the one thing that broke me down was the mom who described an almost exact scenario as mine. She gave birth at one hospital but that hospital didn't have an ECMO machine so they transported the daughter across town to the hospital that did have the ECMO machine. So while she recovered at her hospital, her daughter was fighting for her life at another hospital. I was away from Rebecca for the first 3 days of her life. I was at St. Joseph's and she was taken to TGH. I never cried about it (mostly because they had me drugged out). I mean like I've NEVER cried about that. So as I listened to this mom's story I just broke down. I couldn't stop crying. It felt so real as if it were happening right now. I just rode the wave until it was over. Hannah came running up to me asking what's wrong. All I could get out was "I'm just overwhelmed". Poor thing was probably traumatized, but boy did I feel better afterwards. I'm sharing all of this so that I never forget to continue to raise awareness. So I remember these feelings that many parents are currently going through.

 I know I haven't done a post-surgery update yet but it's coming.