Heart Month is Over, Can We Stop Talking About CHD?

Heart Awareness Month is over, we can stop talking about CHD right? No, of course not there is so much more work to do to raise awareness.  Most people who know about CHD have been thrust into the world of heart defects with a child’s diagnosis or their own diagnosis.  It’s incredibly traumatic for many reasons but primarily because it is something we never heard of. Why is that?

Congenital Heart Defects aren’t known to most people because there are so many different types and combinations.  On top of the variety, when we talk to people about CHD sometimes the umbrella term of CHD never comes up.  I’m guilty of it too. When I talk to people about my son I try to break it down to why his heart is different and sometimes I never say “CHD”. I’m trying to make is so someone who has no medical background can understand.  If I say things like single ventricle or Pulmonary Atresia they have no idea what I’m talking about.  I tend to keep it simple, I bet most people do the same thing.

If CHD is ever to become a household term we all have to make more of an effort in the branding of the condition. For those outside of the marketing world, branding is when you give something an identity.  When you hear of other diseases, for example cancer no matter what kind of cancer, you have a base understanding of what that means.  There is a cluster of cancer cells growing and causing major problems in the patient. You may not know the severity but you know the person who has it will be fighting to get well and sadly not all will win that fight.

When most people hear CHD or Congenital Heart Defect they don’t have a base knowledge to work from.  They don’t know how common it is and they don’t know how many kids we lose because of it.  When I speak with people I try to assume they have no idea what I’m talking about.  It allows me to give them the basics and most critical information.  If they show an interest I’ll go into more detail.

I enjoy talking about my son and CHD.  He is my third child and he has changed the way I parent all of them.  He has made me realize how I need to enjoy every moment. He has shown me how strong they can be at a very young age. He has inspired me to help raise awareness of CHD.  Together we can let everyone know what CHD is and how they can help.

Don’t miss opportunities.  Get involved with the CHD charities.  Write a letter to the editor of your local paper.  Wear CHD merchandise. Make a donation big or small to a foundation. Utilize your contacts for sponsorships and donations. And when you talk to anyone about the diagnosis of the CHD person in your life don’t forget to tell them it is a congenital heart defect. It’s all about the branding.

Telling Others About Your CHD Child

Your child has been diagnosed with one or more heart defects. On top of processing your own thoughts and emotions you have to tell your family, friends, coworkers, etc. what is happening with your child.There are a wide variety of reactions you will see from people.  Some are surprising, some are disappointing.  It will change the way you think about some people and it will change the way some people think about you. Some people just don’t know how to react.  Others will overwhelm you with their support and generosity.

When you talk about your child’s diagnosis here are some of the possible reactions.  You’ll hear, “if there is anything I can do to help, let me know.”  Some will actually mean what they say and will be there for you.  Others won’t and will disappear when times get tough.  Some won’t want to hear about your child, they’d prefer to pretend it wasn’t happening because they can’t handle the reality of the situation.

Others will tell you maybe the doctors are wrong to try to make you or themselves feel better.  They might even think this false hope is helpful in some way.  This can be frustrating especially when you’re the one who has seen the tests and spoken with the doctors. It’s not helpful. You don’t have the luxury of denial since you have to make plans for getting your child the best medical treatment, making sure your finances are in order to pay for care, making work arrangements if you need extended time off or to work from the hospital or even another city.  For your baby you need to face the situation directly.  False hope the doctors are wrong will only prevent you from making necessary preparations, ultimately making everything more difficult.

On the other hand, you’ll have some people really step up to help you.  Some might help by watching your other kids so you can be in the hospital. They might bring you takeout when you get home from the hospital so you don’t have to cook. They might just be there to listen when you need to talk out some of your emotions.  They might help you raise money for CHD charities or even help you get by when money is tight. I’ve found there is no limit to some people’s kindness and generosity.  Throughout my entire experience I have held it together at every point, except when people have gone above and beyond helping when I didn’t expect them too. I’ll admit these are the times when I’ve been moved to tears.

You’ll see the best and worst in people.  The important thing to remember is no matter what reaction you see in people it is their reaction not yours.  You can’t change people or how they feel.  You can show them how you handle the situation and possibly inspire them by your strength, positivity and faith.

Congenital Heart Defect Twitter Party

Congenital Heart Defect Twitter Party

What: – Congenital Heart Defects are the #1 Birth Defect.  Of every child born 1 in 100 will have a heart defect.  One third of them will need life saving intervention in their first year of life.

We are having a CHD Twitter Party to come together as a community to share our experiences, talk about some of the exciting efforts in research and charitable fundraising. We will also be raising awareness about CHD’s throughout the twitterverse.

Come join us, make some new friends and help the cause.

When: Monday June 3, 2013 7:30pm – 9:00pm EST

Who: – Hosting will be myself @theheartdad (my 10 month old has Hypoplastic RV, Pulmonary Atresia, VSD, RV Aorta and Straddling Tricuspid Valve) along with @Klac14 (HRHS) and @KristineBrite (Newborn health advocate, award winning blogger and mother to Cora).

How: You can follow along directly on twitter with the hashtag #CHD however it is best to use a third party application like Tweetgrid or Tweetchat.  I’ve created a custom tweetgrid for the party to make it easy for anyone who is new to twitter parties.  Follow this Custom Tweetgrid Link , log in and enter your twitter handle into the third column.  Can’t wait to tweet with everyone!