NeilRubenstein

May Update:

I am going to take a break for the next couple of months with respect to my son’s story and how we dealt with finding out he had the birth defect congenital diaphragmatic hernia. This month I want to write about the Day of CDH Awareness which was April 19th. Next month, I plan to write about how CDH has affected our current pregnancy. We are expecting another boy in September.

April 19th is the International Day of Congenital Diaphragmatic Hernia Awareness. Since I have been so deeply affected by CDH, I have become the Illinois and Wisconsin Rep for CHERUBS. CHERUBS is the first and largest charity devoted to raising awareness of CDH, supporting families affected by this birth defect, and encouraging much needed research.

CHERUBS sponsored 14 parades around the country this year including 2 in Illinois on April 19th or 20th to help raise awareness of this birth defect. It’s only April but CHERUBS has already had an amazing year. Over 30 states issued proclamations recognizing April 19 as the Day of CDH awareness. Plus another 40+ cities and towns issued their own proclamations. In fact, we had 10 proclamations in Illinois alone including the state of Illinois and the city of Chicago. We also had some CHERUBS members jump out of an airplane in the UK to help raise awareness along with 4 buildings around the world light up in CHERUBS colors. The US Senate unanimously passed a resolution commemorating April 2013 as CDH Awareness Month, and the House is currently considering a companion resolution.

I personally organized the Chicago Parade of CHERUBS for the second year in a row. Despite the miserable weather we had, I am happy to say that we had over 60 people from 3 states participate this year. This year the event served a couple purposes. The parade’s main goal was to increase awareness of this birth defect that so few have heard of (yet takes at least 27,000 lives per year) and to bring families together to help build a sense of community among people who have a bond that is often thicker than blood. However, this year we also raised funds for much needed CDH research. 50% of the money raised this year is going towards research at the national level and 50% will be donated to Ann & Robert H. Lurie Children’s Hospital of Chicago. The Lurie Children’s Hospital of Chicago donation will either be earmarked for the NICU (a place all families affected by CDH know too well) or the ECMO program. ECMO or extracorporeal membrane oxygenation is a heart & lung bypass machine that 50% of those diagnosed with CDH require.

I don’t want to get ahead of myself, since I haven’t finished telling my son’s story here. But my family is truly blessed. Only 50% of those diagnosed with CDH survive. There are 1600 new diagnoses per year in the US alone. That’s 800 children who die from a congenital diaphragmatic hernia every year in the US. It may not seem like a big number to some. But to those of us who have lived through the horror of not knowing if your child is going to survive or not, it’s a huge number. Now imagine trying to go through this alone. That is how my wife and I felt. This is why I have become the Illinois and Wisconsin Rep for CHERUBS. No one should feel alone during such a traumatic time.

I am doing my best to not only spread awareness of CDH and CHERUBS, so that those affected know there is access to reliable information about CDH but also to help create a stronger sense of community among those affected. Obviously, I focus mostly on Illinois and Wisconsin, but I am active in CHERUBS on a number of different levels. So I’d like to believe that my impact is felt on more than just the local level.

My hope is that with increased awareness, the research dollars will eventually follow. I pray that the increased research will lead to new and better ways to treat CDH along with more consistent care for CDH babies around the world. A 50% survival rate is just not high enough for this day and age.