The reality of CDH is that it changes the lives of everyone connected, even in a small way, to the baby born with CDH. Whether that baby survives NICU, lives a full long life, or grows wings early on, it changes you. Every year 2,500 babies are born with CDH. 50% of those won't make it. Those that survive the initial birth defect and NICU, battle illness and have life long medical problems. Not every baby that survives NICU survives the after effects. When we were in NICU the...re were 4 babies fighting to survive CDH. Before we were released, one passed away. Right after we were released, a second gained wings. We saw that 50% survival rate first hand. Only two of our babies made it out of NICU and home. My son Liam, fought hard to survive. We we're able to bring him home from NICU. Our battle didn't end there. Just because a baby with CDH is released from the hospital doesn't mean they are healthy and "fixed". Healthy becomes a relative term. Healthy just begins to mean, home. They're still sick, still fighting. CDH weakens the lungs, the intestines, the immune system and more. CDHers get sick easily because of this and they stay sick longer. A cold to you is nothing compared to what it does to someone with CDH. A cold means a hospital stay. It often times means IV's and oxygen. A healthy person can be sick for a few days, but in a CDHer's case, like my son Liam, stay sick for weeks. Every parent to a CDHer just wants their baby to be healthy. They'd do anything to help them, including becoming their home nurse. Every day parents of CDHers straddle the line between parent and nurse. Home oxygen, tube feeds, mediport flushes are just a few things so many parents have to learn to do for their children. When I talk about CDH awareness, I think of the whole picture. The babies battling in NICU. The children fighting life long medical problems. The parents who have to become nurses. The doctors and specialist trying to give these kids their best chance. CDH awareness week is March 25th-31st. Will you help raise awareness?
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