Monday, February 7, 2011

Awareness=Funding=Research=Hope=Life.









"There is a political element to research funding. Though we would like to believe that the best or most important science always gets funded, this is not the case..."

Stop. Re-read the quote above. Now read:



Congenital Heart Defects are the # 1 birth defect in the country.

Can you guess how funding for CHD research adds up?

Yep. Not as "politically important" apparently. Oh REALLY? Tell that to the kids of the #1 birth defect. Then have a chat with their parents. Their siblings. Friends. Go visit a few graves.

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Bring on CHD Awareness Week 2011 - and welcome to it, your in it. :)

Now, after reading those tid-bits, you may see why I take the "job" Gwen gave me very seriously and why this post may be a little edgy.

And, now, if you are out of time, you need not read more. That really says it all. Those are your "CHD awareness" nuggets for the week.

But, for those of you who are really in this with me for the long haul thank you, and, hold that thought above and read on. See if your feathers get a little ruffled too.

And for those of you who remember Gwen as a real, whole, entire-person who could have had an even better chance to live longer, just well, hold that thought and hold her with me, if you will, (I'm always holding her, just so you know) and read on:

CHD is the # 1 birth defect in the country.

Did you hear of it CHD's before Gwen?

I did, to be honest, but I didn't know it. One of my best friends I grew up with has a child with Aortic Valve Stenosis. I'm not sure if she even knows that we are under the same umbrella (I've yet to discuss this with her and tell her she is a "heart mama"). CHD as a title, is a big umbrella - and not all CHD's are as complex and life-threatening as Gwen's.

However, wouldn't you think the #1 birth defect would be well-funded for research and as well-known as the common cold?

Ignorance may be bliss, but it hits hard. Let me tell you.

I personally, would have like to have known that the 20 week ultrasound can give you really bad news. I feel like a moron, now, that I didn't know that. I didn't know that a baby with a heart defect CAN survive that long in-utero. It just would have been a feather in my cap, to know that. Nothing would have been better per-say, upon learning about Gwen's heart problem. However, I may not have been so completely blind-sided and full of guilt wondering what I did wrong. And I'll take that. That would have been just nice.

I had never heard of such a thing before - surely therefore, I did something horribly wrong which caused her heart to malform. Logic doesn't live in emotion land. When it's your child, you believe your emotions.



This leads me to the next important detail I'd like to share. Keep in mind: #1 defect, low funding therefore less research...

Congenital heart defects have NO KNOWN cause in the majority of cases.

This reality both helps me as I try to convince myself that I really couldn't have done anything wrong knowingly, but also, well, on the flip-side, wouldn't it be fantastic had the funding been there years ago, so that I perhaps there would be a known cause by now and I could have prevented it, had I known how? I'd be holding Gwen in a way everyone can actually see right now.
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Okay, well, here's some more highlights that raised my eyebrow anyway. I was researching, trying to really understand WHY there was so little funding for CHD. I kinda wish I didn't know now. Ignorance is bliss. This hit hard.

"Research in areas of political interest may be funded at a rate up to twice as high as average while other areas can be neglected.... Though research related to CHD has grown considerably over the past decade, grant applications in this area do not reach the average 20% success level. Those of us working in the area feel that the lack of a political impact in regards to CHD has been a disadvantage relative to other areas of research. In general, diseases and defects in children get proportionally less emphasis than adult diseases."

"The problem with low funding rates for a particular research area is not only that useful research opportunities are missed but that the low probability of success drives promising scientists into other research areas. "


Feathers ruffled?


To CHD Research Scientists:

God bless you, each and everyone, who has or is is dedicating time to studying CHD.

I met some of you at CHOP and the gratitude I feel (to you and the surgeons, doctors and nurses)... it is the two months I had Gwen and all the HOPE for her future we really had... words don't exist for that kind of gratitude.

Had Gwen been born over 50 years ago I would have taken her home knowing she didn't have a fighting chance. Go back 20 years and repair her heart, and even then, "the early mortality rate after complete repair was higher than 25% in most series."

I'm grateful that hearts can be "repaired" and in awe of the amazing success rate and long-term survival for all kinds of complex CHD's - and I will say it again - how humbled I've been since really learning the complexity of the heart; how it is formed, all of it, in a mere eight weeks, and truly, I am astounded that the heart ever forms correctly.

As the heart does not always form correctly and we have come so far in saving these lives, lives that are just beginning no less, it is inexcusable that the research is underfunded. The funding should be there for all CHD warriors - children and the adult survivors alike. My hope is that advances in treatments and technology are exponential in the years ahead.

Awareness=Funding=Research=Hope=Life.


The quotes above are from; A View of Congenital Heart Defect Research by a Basic Scientist by Raymond Runyan, Ph.D., University Heart Center, University of Arizona. I encourage you to read the entire piece. It is a fascinating look at the research that has been done and what is on the horizon for CHD research. http://tchin.org/resource_room/c_art_05.htm

5 comments:

  1. Wow, this is a BEAUTIFUL post. Do you mind if I like to it on my blog this week? It says so much of what I feel, but, like usual, it's WAY better written than I'd have done! :-)

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  2. Great post! Keep it up! You're doing Gwen proud!

    Love that last picture, by the way... made me tear up.

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  3. @ Amy, you can link...thanks.

    @Elisa, miss you too. Thanks for reading. I'll be back in touch one day...but I appreciate "seeing" you here.

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  4. Laura, This is such a great post and yes my feathers are so ruffled. It just angers me to my core that there is no funding for CHDs. Most people think heart disease only affects adults. I admit before Jake I knew nothing or very little about CHDs. I hate that so many including your sweet Gwen are taken by CHDs but it just pushes me to fight even harder for HOPE.

    Hugs from Jake and I.

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  5. This was amazing to read. Thank you for your words. I too am a heart mom to a CHD angel.

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