Posted by Neil Rubenstein on September 13, 2013 · 15 Comments
As my second child is about to be born with the birth defect congenital diaphragmatic hernia (CDH), I can’t help but think about the lack of research funding for this not so rare birth defect. CDH occurs in 1 in every 2,500 pregnancies or 1,600 per year in the US . This translates to over 50,000 annually worldwide. With a 50% survival rate, that means there are over 25,000 children per year who die from CDH. The chance of having one child with CDH is .04%. Even though the geneticists don’t think it’s genetic in our case, the accepted probability goes up to 2% after your first child with CDH. So my family had a 98% chance of having a CDH-free child, but unfortunately we fell into the 2% of those who have an additional CDH child.
CDH occurs when the diaphragm fails to form fully allowing organs from the abdomen to float into the chest. When this happens, the abdominal organs such as stomach, intestines, and often liver put stress on the lungs and cause the lungs not to develop properly or at all. This is pretty much a given. But there are so many other organs that can be affected plus children diagnosed with CDH have a higher likelihood of having other chromosomal abnormalities.
CDH is not technically rare, but it feels rare because so few have heard of it until it affects them directly. My family has been affected by it twice now. I have no idea what the next few months hold for us, but I do know that I will keep fighting to raise awareness of CDH and in turn the need for CDH research as long as I can.
To that end, I just launched a CDH research fundraiser. A good friend of mine, Ross Crean offered to write and perform an original lullaby inspired by the fight so many have to face when dealing with CDH. I am “selling” this song as a way to help fund much needed CDH research. The minimum price for “A Fighter’s Lullaby” is $1.89 but you are more than welcome to donate more at the time you “purchase” the song. All proceeds from the song will go towards CDH research. You can see the official video and purchase the song on the CHERUBS Illinois blog. I hope you appreciate and enjoy the lullaby as much as I do
