April 19th is the day that CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support recognizes as the International Day of CDH Awareness. CDH is a birth defect that affects 50,000 children per year around the world (and 1600 per year in the US). Only about 50% survive this life threatening defect. There are approximately 70 cases of CDH per year in Illinois alone. CDH occurs when the diaphragm fails to fully form (or form at all) allowing abdominal organs to move into the chest causing stress on the lungs (typically while still in the womb).
This may not sound like a big deal...but imagine your child is in the NICU after being born. 1 week, 2 weeks, oftentimes for months before graduating to go home. During this time, you see babies with heart defects, gastrointestinal problems, etc. come and go. In my son's case, he was one of the larger babies in the NICU, and we often caught other parents staring at him...wondering why he was even there. He wasn't a preemie...he looked so big (and strong). Little did they know that he was techincally in worse shape than the baby with the heart defect that entered the NICU at the same time as our son (but was just discharged).
So why is April 19th so important? There are 7 events going on around the country, 1 in the UK, and 1 virtually via social media to help raise awareness of this not very uncommon birth defect that no one has heard of. There is a .04% chance of having a baby with CDH (1 in every 2500 births). And after your first child, the probability goes up to 2%. This birth defect is just as common as spina bifida and cystic fibrosis. This year is the most coordinated effort to raise awareness in CDH and CHERUBS' history. We have close to 80 people in Chicago alone marching on April 19th in the Chicago Parade of Cherubs.
So what is the real significance of April 19th? Why that day? This day was chosen becauase it was the day that the Federal government made a decision in a landmark case to revoke the trademark held by another organization for the phrase "Congenital Diaphragmatic Hernia Awareness". With this trademark removed, CHERUBS was now free to use this term to help raise awareness and further it's mission of helping as many familes affected by CDH as possible.
April 19th is an incredibly important day in CHERUBS' history which was why it was chosen as the International Day of CDH Awareness. It is going to be an amazing day of CDH awareness this year. Be sure to check out the Virtual Parade of Cherubs on Facebook to find out how you can particpate without being at one of the events in person.