When Liam was born with CDH, it left me devastated, scared, unsure. I questioned everything. I was so broken that I spent the first 36 hours crying, screaming and begging God not to take him. The doctors had to sedate me to keep me from bleeding out from the C-section. The specialist gave him zero chance of survival but promised they'd continue to try until there was nothing left they could do.
Liam surprised us all and flew through NICU with just a 48 day stay. Our journey didn't end there though. That was merely the beginning of the end. The struggle was difficult. Our marriage almost didn't survive it. When Liam turned 3 years old, things just changed. He started getting healthier with each passing day. When he turned 4, we all said this was his year. The year where he got to start experiencing life as a healthy boy would. He loved to play in the dirt and be outside. He loved preschool and making friends.
Then one day he got sick. He caught a cold like virus that his weak immune system just couldn't fight off. The virus entered his blood stream and caused an infection. The infection then caused a blood. Ultimately a pulmonary embolism took the life of my happy, sweet little 4 year old. All because of Congenital Diaphragmatic Hernia.
It sounds like some freak accident when you read it, like it could never happen to anyone else. Truth is, it has. Similar circumstances have happened to other children born with CDH because their immune systems are weakened.
In memory of Liam and Maddie, Sean, Isaac, Remy, Mateo, and so many others who were taken from us too soon because of CDH and for Ava, Andrew, Andrew, Patrick and so many others living with the effects of CDH, I will continue to spread CDH awareness. I will continue to tell my sons story. I hope that whoever stumbles upon this blog will too help spread awareness.
There is no known cause to CDH so therefore no way to prevent a baby being born with it. You can say "no not my baby" but you never know. You never truly understand how CDH effects your life until you have a child born with it. 2,500 babies are born with CDH every year in the US. The survival rate right off the bat if only 50%. That is if they don't have any other medical or genetic issues. If they need ECMO their survival rate drops. If they need to be transported, their survival rate drops.
Lets change that. The more awareness we spread, the more research will be done because more people will donate to hospitals currently researching CDH. We can help give future generations a better chance at survival from CDH.
CDH awareness week is March 25th-31st
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