Thursday, February 21, 2013

Join or Die

Why is it so few people know that Congenital Heart Defects (CHDs) are the most common birth defect?

I think one of the reasons we, as a CHD community, have had trouble getting the word out is that we aren't working hard enough to work together. We are not as united as we need to be to make a real statement. We are too possessive of what work we've done and not open enough about embracing all of the groups that have been put together.

This just became apparent to me again yesterday when one person asked a heart mom to shut down a new group that had been made on Facebook due to the name used for the group. When people become possessive of names, there are problems. This is also a story I have heard over and over again through the years regarding the American Heart Association (AHA). Everyone associates the AHA with the heart. They've done a good job of that, but what they haven't done well, in my opinion, is reaching out to the CHD community. I heard from several parents that when they tried to start a group that had any semblance of the words "American," "Heart" and "Association" in it, they received communication from the AHA that they would be sued.

Over and over again I have seen bereaved parents start their own organization or fundraiser in their child's name rather than join in a group that has already been started. We are a splintered group. We are like an assortment of sticks scattered throughout a yard instead of a tightly wrapped bundle of sticks that could serve some kind of purpose. This divisiveness is hurting us. It's preventing us from getting the word out for the public to hear about CHDs.

We aren't the only group this has happened to. The autism group has suffered from the same infighting. Here's a URL that discusses their need to stop what they were doing and to start working together:  In the URL, there was a call for a summit to bring all the splinter autism groups together to establish a series of joint goals.  They realized that until they came together to address the issues facing families dealing with autism, individuals would suffer. They had to put aside their differences and work together for the good of the entire community.

I didn't find any one conference where it clearly addressed this issue, but I was stunned at how many autism conferences were easy to find for 2012 and 2013! This site: was especially helpful for listing a great variety of conferences for the autism community.

Doing a similar search on Google for CHD conferences did not yield the same result.  Individual conferences presented by a certain institution or group were visible, but on the first 3 pages of the Google search using the words "congenital heart defect conferences 2013" the only link that looked like a listing of helpful conferences was for physicians -- despite the fact that parents, schools and communities are impacted by CHDs just as much as they are by autism.

Some organizations in the CHD community seem to be reaching out to one another and working together. I just joined the Adult Congenital Heart Association (ACHA) and the Children's Heart Foundation (CHF) partly because I was delighted to see these groups working together! In fact, my family and the Cataldo family will be walking together in the Congenital Heart Walk - Central Texas next month. Here's a link to the event:  This event is being sponsored by the ACHA and the CHF. Yes! Two groups working together! That's what we need more of if we're to be a strong presence capable of spreading the news about CHDs, options available to parents, the good news about how more people are surviving what were once-fatal heart defects and where the CHD community is. We are here! We are all over the world. It's time for us to join hands and reach out to one another in the spirit of giving, educating and providing hope.

Only then will we be successful in our mission of spreading awareness of CHDs.  Benjamin Franklin said it best in a political cartoon published in the Pennsylvania Gazette on May 9, 1754.  Join or Die were the three simple words on the cartoon depicting a snake cut into pieces and labeled with initials for the colonies.  Join or Die my heart friends. Let us not be a snake cut into pieces with labels of our heart organizations. Instead, let us join together, work together and make a united effort to help the world and save lives.

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