Dealing with Congenital Diaphragmatic Hernia is like nothing else on this earth. It's a horrible, horrible birth defect that steals the lives of 1000's of babies every year. But it's proving so hard to get anyone to take notice! Over a half a million babies since 2000... why isn't this on the National News every day until we find the cause??? Why isn't there more Congenital Diaphragmatic Hernia Awareness that actually does something to help these children???? Families dealing with CDH not only have to deal with the horrible medical issues involved - the hospitalization, surgeries, ECMO, etc - and sometimes losing their children.... but they also have to deal with the fact that hardly anyone has ever heard of CDH. Searching for information, searching for support, searching for hope.... thank goodness there are groups who do help these families now (there were none 15 years ago and only 5 years ago there was only one - CHERUBS).
But CDH is a different journey for each of us. It takes on different paths in the same valley. We each learn different things and each become a thread in the CDH community. We are each the families who have experienced CDH and each now have a responsibility to help others who come down this path after us. We should all be working together to help each other and new families. All CDH families, all CDH groups, all CDH sites.
I compare it to CDH giving us all tools to help others... like bricks. Each experience we each have, each day with our cherubs, each complication, each procedure, each ultrasound, each piece of research we find, etc - a brick. We can all chose to take our bricks and build our own little houses or a few working together to build apartment complexes or tiny community buildings... but imagine what we could build if we all put our bricks together.... a hospital, a research center, a CDH library... finding the cause and prevention and best treatments for CDH. That's our goal at CHERUBS and ACDHO... working together for the common goal of stopping this monstrous birth defect.
I hope every CDH family and group will chose to work together.