So the Day of CDH Awareness has come and gone. From everything I am hearing we made quite an impact. There were thousands of websites that picked up the Press Release, countless articles written, a handful of TV stations that picked up the story, at least 15 states issued Proclamations, and hundreds of people affected by CDH marching in cities all around the country. In fact, we were able to obtain a Proclamation from Illinois and Wisconsin along with the cities of Chicago, Peoria, and the village of Wheeling to support our efforts here in Chicago (and in Illinois).
Our Parade of Cherubs in Chicago had over 50 people march around Children's Memorial Hospital to help raise awareness of congenital diaphragmatic hernia. We had CDH angels represented, babies diagnosed in utero, babies ranging from 1-5 years old, and even a 17 year old survivor. We had parents, rainbow siblings, aunts, uncles, friends, siblings, cousins, and even a doctor. We had three states represented. And if I had asked everyone which hospital they received treatment at...I probably would have received at least 8-10 different answers.
But we all came together for one reason -- to bring more awareness to the birth defect that has affected us all - CDH. 800 children die per year in the US alone and virtually no one has heard of congenital diaphragmatic hernia. Over 25,000 children die per year worldwide and yet still very few pay attention.
Other than meeting a lot of great people and some truly, truly amazing children...I came away from the march with something else that I couldn't get out of my head -- the lack of uniformity in care in the Midwest (let alone the rest of the country).
Why is care so different from hospital to hospital? In my mind it's a simple answer...lack of funding for research. Why does my son's surgeon require a hearing test every 6 months to try to catch the high frequency hearing loss that she's seen occur in children up to 5 years old? And yet many doctors aren't even aware of this side effect. Why do some doctor's recommend ECMO only pre-surgery to help stabilize the baby while others will use it post-surgery? Why do so many of us meet surgeons and pediatricians who have only read about CDH as part of a chapter in a book?
Without awareness...there is no public interest. Without public interest...there are virtually no funds for research. Without research...there are no true standards and very little advancement in treatment and prevention. How is this possible when 25,000 children die per year from congenital diaphragmatic hernia?
April 19th is one day per year. We need every day to be a Day of CDH Awareness! Please like the Virtual Parade of Cherubs on Facebook to see pictures from all the events that took place as well as many pictures from those who weren't able to participate in person. Please like the CHERUBS fanpage. These two simple things will go a long way to help us show just how rare this birth defect isn't.