Fight Harder

The CHD Blog Carnival planned for November 30 has been canceled – there were only three submissions. And  I sent at least 15 personal e-mails to various CHDers and/or their parents, inviting them to participate.

If you want to beat Congenital Heart Defects, you’ve got to put some major research money into the research projects currently being worked on. You also have to be willing to fund future research based on the results of what we learn. There are two ways to do this:

1) Find a CHD research project that you support and present them with a check of at least $100,000; or

2) Raise awareness about heart defects in the eyes of the general public and keep highlighting the cause until projects are funded through private or federal grants.

I certainly don’t see myself writing any big checks anytime soon, and I bet you don’t either. So we have to talk about heart defects. Get noticed. Draw people to our side. 1 in every 125 live births are affected by a heart defect. Isn’t that enough reason to fight?

It’s like climbing a mountain – it’s not going to be easy. When people hear “CHD” they think Coronary Heart Disease, which is obviously not the same thing. But worthwhile goals are never easy.

Lately, I’ve seen a good deal of pessimism in the CHD world. “We lose two children an hour to Congenital Heart Defects,” a blog post I read stated. Where are those numbers coming from, because two CHD deaths per hour in the United States means CHD has a 40% mortality rate. The worst Polio epidemic on record (1952) had a mortality rate of 18.4% And if you are old enough, you remember how much of a panic Polio caused.

But why emphasize the number of deaths, anyway? We’re winning. Why not emphasize the fact that 96% of children who need Congenital Cardiac Surgery survive? The vast majority of those children grow to full adulthood, too. And Adults with CHD are living longer, better lives. Last February Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), noted that the oldest ACHA member had recently passed away.

She was in her seventies. So why not talk about our wins instead of our losses?

And surgery isn’t going to be the ultimate answer anymore – yes there will be a need for it, but broken hearts will soon be fixed with organic patches, gene therapy, stem cells, and prenatal treatments. Some CHDs will slip through undetected – defects in the heart’s electrical system can be very hard to find – but doctors will figure those out, also.

It’s not time to moan and groan and give up the fight,  but to push harder.  Red and Blue Day is this Sunday, that’s a good place to start.

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5 Responses to “Fight Harder”

  1. Lisa @ All That and a box of Rocks Says:

    Steve,

    So sad to hear of the cancelled blog carnival. Maybe postpone it for a week instead?

    I think the negativity comes this time of year, along with the busyness of the holidays. You are so right….we ARE winning! So many people are alive today that wouldn’t be 20 years ago.

  2. Lilian Says:

    Oh dear, I was going to write an entry for the carnival, but I couldn’t get it done in time. Maybe you could postpone instead of cancel, as Lisa says.

    As people are often saying to me (I have/had a CHD) – it’s amazing what they (medical practitioners) can do these days!

  3. Shannon Carter Says:

    Steve,

    I was going to submit a post…I’m an incredible procrastinator and can’t seem to get anything done much before the deadline. I was actually working on it tonight. I’m so sorry! I’ll go ahead and finish it just in case you decide to do it another time!

    Like you, I don’t see myself writing any big checks any time soon…I write enough of them to the hospitals, but unfortunately it’s not for research! I want to do my part to raise awareness. My little guy is counting on it!

    Shannon

  4. RHONDA LYLE Says:

    I hate that it got cancelled. I would have expected a better response. I know that there is a lot of negative things, comments, etc..and doom over CHD children. I hear it from my own family sometimes…of course I always set them straight! I appreciate all you do and your efforts.
    Blessings to you my friend!!

    Rhonda

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