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.

We Talk the Talk, Can We Walk the Walk?

5 bucks 2In the CHD community we talk all the time about how we need more research, we need more answers, we need more awareness and we need more funding.  Well funding starts with us. People respond to action. It is up to you and me to show the rest of the world CHD is important and worthy of their support by supporting it ourselves.

There is an estimated 2,000,000 people living with CHD.  Let’s say on average those people with CHD have 3 close friends or family members who really support them.  That’s an additional 6,000,000 people bringing us to 8,000,000 total who would like to see CHD get more funding.  Let’s look inward at our community. If every one of those people went online to their favorite CHD charity and donated $5 we are looking at $40,000,000.  Can you imagine the impact that would have?

I have been saying that I’m going to do it for months now. It’s time I start taking action.  I donated $10 to three CHD charities that’s $5 each from my wife and me.  We live paycheck to paycheck like most families.  However, $30 isn’t going to break us.  I want CHD funding so we can get on the national stage and make a major positive impact for our CHD loved ones.

I’m officially giving you the challenge to donate whatever you can.  The smallest amounts can have a very large impact.  If you can’t donate, ask others to contribute. The reality is most people won’t take action, even though they want to. This is a grassroots challenge.  If we make it viral you will be amazed at the results.  Share this challenge on Facebook, Tweet it out, Text your family and friends.  Put a jar in the lunchroom at your work. Let people know CHD funding is important, especially to you and they will respond.

Will you read this post and nod your head yes, or will you click over to a CHD charity and give what you can? Are you to shy to ask for others to help our cause or are you willing to take a leap of faith and ask others to help the cause.  It all starts with us. #FundCHD

 

Here are a few CHD charities you can donate to. If you don’t see your charity email me and I’ll add it to the list.

Children’s Heart Foundation

http://www.childrensheartfoundation.org/forms/General-Donation.html

Adult Congenital Heart Association

https://www.achaheart.org/get-involved/donate/donation-form.aspx

Saving Tiny Hearts Society

https://www.savingtinyhearts.org/donate-now.html

Mended Little Hearts

https://mendedlittlehearts.gnosishosting.net/Portal/NewDonation?eqs=x2cgBSfai1W0TCUQ4Zki8vZVyYTAH1qIvfwDna7eErZDZG7emAX5fnmvSzkF49XK&

Why I’m Not Wearing Red for Heart Month

Macy's got on board with ACA. This is one example of many of corporations using heart month to help acquired heart disease.

Macy’s got on board with ACA. This is one example of many of corporations using heart month to help acquired heart disease.

We all know February is Heart Month.  I’ve seen so many people in the CHD community touting their red attire in support of their CHD warriors.  It’s awesome to see people taking action to try and raise awareness for the cause. The question is, are people outside our community getting the message?

February is heart month, our CHD efforts are in competition with acquired heart disease who have a huge head start on us. They have the machine in place to generate more articles, TV segments and to solicit the all important donor dollars. Acquired heart disease also has hugely successful campaigns like “Go Red For Women”.  So when we wear red are we achieving our goal of standing out? Or are we blending in causing our message to get lost?

I would never discourage someone from taking action.  If you want to wear red, go for it. Any awareness you can raise is fantastic. I would suggest you stand out by wearing RED and BLUE, the official colors of CHD.  And really emphasize the blue so people understand your efforts are different.

We can no longer afford to blend in. It’s time to stand out and really separate ourselves from acquired heart disease.  We should ask ourselves as a community. Is February really the best month for us to push our cause into the public conciseness?  It’s a discussion we really need to have. My answer is no.

Not only is the month dominated by acquired heart disease in every way, it is also African American Heritage Month. That means TV stations who might be willing to run Public Service Announcements for us have to share the limited time they have available with other important causes if they can squeeze us in at all. The same goes for pitching articles and trying to get on-air segments for national and local television programs.  All that time is limited and we are fighting an uphill battle to get CHD the coverage it deserves. Additionally, corporations are committing their money and support to other causes.  We are competing with Valentine’s Day too. There are a ton of stories being generated focused on V-day taking away  potential space for us.  National Heart Day is February 14th.  No one knows it outside our community because they are preoccupied with their significant other or lack there of.

By continuing to use February as our awareness month we get far less impact then we would in a month we really claimed as our own.  It’s already over saturated. We need to be different.  We need to be bold.  We need to stand on top of the hill and claim a month as ours so when we say why CHD is important people listen and take action to support it.  Is it January which already is national birth defect month? Is it November? Is it another month?  It’s time to start thinking outside the box and get CHD to the next level of awareness and funding. Let’s start the dialogue to get us there.

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.