CDH Awareness Day - A Grassroots Effort

When Breath of Hope started the Congenital Diaphragmatic Hernia Awareness Day^® Campaign in July 2007, our Board of Directors each wrote a letter and supplied a sample proclamation to their respective state Governors. There is room in the letters for those affected by congenital diaphragmatic hernia to share their stories. We didn’t know if it was going to work. my letter was sent to Governor Tim Kaine. We started to get Proclamations in from other states in the United States . Those of us who had sent in letters and not received proclamations wondered why our states were not responding. Several of us called our Governors' offices and we were told they don’t issue them until a few months prior to the day of the request and was assured that it would be honored.

Later, I was called in February 2008 and told that congenital diaphragmatic hernia covered several other birth defects and they were thinking of doing a Proclamation in Virginia to cover all Birth Defects. (That includes birth marks, correct?) - I felt defeated. I also felt elated because we had 31 states issue Proclamations and Resolutions for March 31, 2008 to be Congenital Diaphragmatic Hernia Awareness Day.

The empowerment that it gives people that a simple request can make a day to honor these families, memorialize the angels lost to this devastating birth defect and also educate the general public to this very common birth defect that is rarely heard of. There is nothing rare with CDH – it affects just as many families as spina bifida, cystic fibrosis, congenital muscular dystrophy and other birth defects which have long received more attention.

Every day 5 families are diagnosed in the US alone. Truly this is a low estimate based upon figures out there because how many are not counted because their families chose to birth early, they were stillborn or they didn’t make it to surgery? Many states do not take accurate data on disease and birth defects. (We are seeing that with reported H1N1 cases in the US now.) This is something that also needs to change and is part of the platform of raising awareness for congenital diaphragmatic hernia.

In early 2009, while checking the Commonwealth of Virginia ’s website and reviewing the Resolutions for 2008, among them was “Congenital Heart Defects Awareness Day”. Now, it is wonderful to have a day because heart defects also need awareness too! Children who are born or diagnosed with CDH sometimes also CHD but congenital heart defects encompass several different birth defects of the heart too. It was then I contacted the Governor’s Office again and also sent in another letter and sample proclamation. I was referred to the Commonwealth of Virginia ’s Bureau of Vital Statistics. I heard back from two amazing women one who asked me “What do you think causes congenital diaphragmatic hernia?” I was taken aback from that question but she explained she likes to hear what parents think. (I liked that too!) These ladies referred me to the Executive Assistant to our Secretary of Health for Virginia . He called me back and told me to send him an email with the information and I did.

After Awareness Day – March 31, 2009 passed – I figured I would fight again for 2010 in Virginia. I then received the Resolution, signed by Governor Tim Kaine. I had long made a promise that this Proclamation would be framed and given to the University of Virginia Medical Center NICU . They deserved this acknowledgement for one of the many birth defects they are on the front lines battling every day. Apparently the University of Virginia also thought this was a good thing since it was featured here in their LINK Newsletter.

I imagine I felt as many did when they received this simple piece of paper, empowered that I had actually done something to make a difference and here was proof. It didn’t have my name on it, or my child’s name either – but it carried with it all the names of all the families who have been affected by CDH and those who help them.

One thing about the families of congenital diaphragmatic hernia – we all are tenacious and determined in our causes and fights. By directing that energy to something that does make a difference – and will make more aware of this birth defect – that gives us hope. Hope that one day the survival rates through research will increase, hope that the children surviving CDH will have more access to medical and therapeutic care that will assist them in having less residuals and an even higher quality of life. These families need that. We as a society need this because the better care, the more we know the less suffering.

Well, what does a day do? Sure, there are Proclamations and Resolutions issued by states and our congress we often wonder why but it does make us more aware and the politicians who vote for medical funding to be diverted to studies to know about congenital diaphragmatic hernia. Would you vote to have funds directed to a birth defect for research if you had no idea what it was? Some would but many would like to know more about what they are voting for and what sort of impact it could make to society and medicine. We know these doctors, nurses and therapists who work on the front lines, shoulder to shoulder with the parents are equally as frustrated and devastated with this birth defect.

An Awareness Day brings notice to these politicians. Senator Clinton was handed a brochure from Breath of Hope during her campaign, and she was impressed that a Proclamation was issued in Iowa . (Thanks to Terri, Ava’s Mommy, who wrote her governor and also handed that brochure to then Senator Clinton).This is a truly grassroots effort of parents, friends, family and medical professionals pushing forward to making a difference. If you would like to join us in this fight to make a difference, please contact us at cdhawareness@ breathofhopeinc. com and we will be thrilled to send you the information to send on to your Governor or Mayor. If you wonder what you can do on this day to bring attention, honor these families please contact us – it can be something as simple as a candle ceremony in your home or church or as big as a press conference that generated thousands of dollars to Medical Research to benefit congenital diaphragmatic hernia which was picked up by the Associated Press – or something in between.