Monday, February 14, 2011

Happy Congenital Heart Defect Awareness Day!

Greetings all Heart Friends and Family!

Today is Congenital Heart Defect Awareness Day. Today is the day we parents have chosen to request that states and countries recognize that Congenital Heart Defects are the NUMBER ONE birth defect! Most people who have not been affected by congenital heart defects are aware of that statistics.

According to the March of Dimes, about 1 in 125 children are born with a congenital heart defect but I have heard that the real statistic is probably closer to 1 in 100.  The American Heart Association used to list at least 35 recognized congenital heart defects, but in looking at their revised webpage:

American Heart Association CHD Statistics

I see that they have modified that number to say there are 15 recognized congenital heart defects. I think they have broadened the scope of some of the heart defects to make it simpler for others to see where their heart defect is classified.  Another interesting thing that the AHA did is change their wording of "congenital heart defect" to "congenital cardiovascular defects."  I hope that in changing the wording they don't make it more difficult for others to find the information they need. 

But what is in a name? William Shakespeare wrote, ""What's in a name? That which we call a rose
by any other name would smell as sweet."  It doesn't really matter if we call something "congenital heart defect" or "congenital cardiovascular defect" as long as people can understand what is being discussed and can find the information they need.

I think it's a pity there isn't more public knowledge about congenital heart defects. It's up to us -- the parents, grandparents and people born with heart defects -- to let the world know about these fairly invisible defects so that others can support research and advocacy in the realm of congenital heart defects. There is no popular star who has been willing to come forward and claim congenital heart defects as their cause -- unlike Jerry Lewis (muscular dystrophy) or Mary Tyler Moore (diabetes) even though congenital heart defects do not discriminate. There have been stars who have been affected by heart defects, but no one has stepped forward to create a campaign of awareness. Instead it looks like that job has required a grassroots effort.

In that vein, I am here blogging about CHDs.  There are many others doing the same. A dear friend of mine, Steve Catoe, used to have a wonderful blog called Adventures of a Funky Heart where he talked about current events in the CHD world and what it was like to be an adult with tricuspid atresia. He was a shining light in the CHD community and I was so sorry to hear he passed away last year. But there are plenty of other sites out there such as:  Congenital Heart Defect Awareness, Nathan's Prayer: Hope for Children with Congenital Heart Defects or Paul Cardall: Living for Eden. There are websites with pages of free information such as Congenital Heart, California Heart Connection: Handouts, Forms and Articles or National Heart, Lung and Blood Institute: Congenital Heart Defects to name a few. There are Facebook groups, Yahoo! groups, private listservs and public listservs available to help people connect.

The one thing we parents of children with heart defects want to know is that We Are Not Alone.

There are conferences to help parents and congenital heart defect survivors such as Heart Heroes Conference, the ACHA Conference and Palmetto Hearts CHD Conference. There are summer camps for children (see Congenital Heart Camps). There are movies that deal with congenital heart defects and videos on YouTube. There is information out there, we just don't have a celebrity spokesperson.

With over a million congenital heart defect survivors in the Unites States alone, CHDs affect literally millions -- possibly billions! -- of people worldwide. 

I hope all of you have a terrific Congenital Heart Defects Awareness Day.  Spread the word. Share an inspiring story and remind people of just how valuable their hearts are.


Anna Jaworski
a CHD Heart Mom

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