CHD Awareness: Funding, Research, and How to Help

I have so much more information to share about CHDs - but today, I want to share the sad truth about funding for research of these issues - and what we can do to help.

Remember the other day, when I told you that CHDs kill twice as many kids as all childhood cancers combined?  Well, what if I now tell you, pediatric cancer research gets FIVE TIMES the funding of CHD research.

Shocking, I know - let me just give you a minute to digest that.

As I said the other day, I'm not suggesting anything should be taken away from pediatric cancer research, that's serious and devestating, too.  But why isn't the funding at least equal for pediatric CHDs?  My theory is this - you can't "see" CHDs.  For the most part, these kids look healthy - unless you catch a glimpse of their surgical scars or if they're looking blue at that moment (from lowered oxygen levels).  Even if you see them on oxygen or something, you would need to ask why they were on oxygen to find out about the CHD. 

But kids with pediatric cancer - well, you can often see they're sick.  Their pallor may change, their hair may fall out....like I said, so incredibly sad and deserving of research, for sure - but I think that "visibility" is why people donate more to causes like that.  Well, that, and the average person just doesn't know about CHDs.

But there's more - for every donation made to the American Heart Association (a wonderful cause, by the way), only $0.30 per dollar goes to research for CHDs - and only $0.01 of each dollar goes to research for pediatric CHD patients!

I'll do the math for you - if I make a $100.00 donation to the AHA, $30.00 goes to research for CHDs.  $1.00 goes to research to benefit pediatric CHD patients.  Stunning, right?

Clearly, great advancements have been made in the last 30-40 years despite this less than optimal funding for research.  Imagine what can be done with proper funding!  So how can we make a difference?

1) Monetary donations.  There are some great organizations out there that raise money for research.  Check out CHF, C.H.I.N., or Hope for BraveHEARTS. 

2) Walks.  There are Congenital Defect Walks (like the Race for the Cure) around the country.  Check your area, see if there is one - walk, raise money, volunteer.  These walks are so much fun and for a great cause!  (If there's not a Congenital Defect walk, why don't you look into March of Dimes March for Babies?  They help fundraise to benefit premature/sick babies generally.  I've had a few friends who have benefitted from their services!)

3. Donate items to heart centers. Children's Hospital of Philadelphia (CHOP) is home of a very well-known pediatric heart surgeon.  As is Stanford, University of Michigan hospital, a hospital in Indianapolis - you get the idea.  The heart momma blogs I read all make mention of how much it means when their children receive new blankets, etc., in the NICU - you can always find ways to donate items to benefit the babies of your local NICU.  Another great way to donate items is to check out Sisters By Heart, which was started by several heart mommas to gather supplies and items they found helpful for new heart families - you can donate monetarily or donate specific items.

4. Spread the word.  Perhaps the #1 most important thing I want to stress is knowledge - arm yourself and your friends, loved ones, strangers with knowledge.  Talk about CHDs.  Talk about the statistics, even though I know they are scary.  Tell people that only 75% of kids born with HLHS live to see their 5th birthday.  Tell them the facts about CHD and Downs Syndrome, the facts about CHD and pediatric cancers.  Hug your heart healthy children close and be so grateful - but never forget the children who are suffering and what they have been through. 

Today's heart family is a very special one.  Meet Owen, a sweet little boy who just celebrated his 3rd birthday.  He is undergoing open heart surgery today, and is expected to have another open heart surgery later this year.  Like many heart babies, he is on oxygen and battles eating issues.  Please stop by his page and support his family - and say an extra prayer for him today and during his recovery!