Saturday, February 9, 2013

CHD Week

February 7-14 is Congenital Heart Defect Awareness Week. Did you know that?

Before Evan, I had never heard of CHDs. I knew about heart murmurs, but that was it. I had never heard the terms "hypoplastic", "atresia", and "stenosis". Considering nearly 1.8 families are affected by CHDs, I was left wondering why myself and nearly all of my friends and family had been so uninformed about heart defects.

CHD research is severely underfunded. You don't see or hear about babies dying from heart defects. There are no commercials of sad, intubated, freshly scarred heart babies with Sarah Mclachlan playing in the background. No major celebrities asking for donations to help give these heart kids a better quality of life. Instead, raising awareness has been left up to a few hospitals, a handful of non-profit organizations, and the heart community.

I've been involved in the heart community for 2.5 years now. Every February, my facebook and inbox is flooded with everything CHD related. I.Love.It. I love seeing my friends support my mission to inform the uninformed. I love seeing my heart moms rally together and raise awareness and support from local and state governments. I love seeing the fire lit in all of us as we strive to make the general public aware of our children, our little miracles.

But this year, this year I am struggling. This year, raising awareness is brining me back to a reality that I try my hardest to avoid. My boy, my sweet, full of life little boy, is critically ill. It seriously makes my stomach turn to say that. My boy is sick. When I look at Evan, I want to see the happy, healthy, destructive little boy that he is. I don't want to see a fragile kid who is scheduled to have his THIRD open heart surgery in just 3 short months. His third surgery to repair his broken heart.. To reconstruct his most vital organ to compensate for the missing pieces.. I just hate it. I hate Congenital Heart Defects.

And you know what else I hate? I hate comparing my sick kid to someone else's sick kid. There is a CHD "fact" circulating that says something along the lines of CHDs killing more infants and children than all childhood cancers combined. And people are proud to post this. I'm sorry if this offends you, but on what planet do you feel it is OK to "rub it in" that heart defects are more deadly than cancer?! Do you realize that while this may be true, it is just as awful?? I have a friend who's son is currently battling a very serious form of cancer, with one option to save him that is not working, and I can assure you no one cares which disease is more deadly, or who has more funding. Cancer may have more awareness, more funding, but they are still dying. They are still left untreated with no options. At least for CHDers, the majority have options.. I wouldn't dare pout that they have "more" than "us". Just think about it.

I hope this year you will grant me grace; please understand that this year, I just can't give it my all. My hope instead is my friends and family will take it upon themselves to think about Evan, think about the little boys and girls like him, and share with everyone you know just how prominent CHDs are. <3


  1. Well said! I myself have used the Cancer/CHD comparison but no more. After a friend's CHD warrior was diagnosed with brain cancer, the reality hit me: either way, it's terrible.

    From a fellow heart mom, hugs.

  2. I see. Having my first grandbaby come in to this world at the receiveing end was the most beautiful site ever..then 21 hours later through routine pulse ox test we learned something was was wrong after finally being flown to childrens hospital in Kansas city we find out it is a chd called TGA plus other heart defects..we r still on the journey...getting cathed end of may..after already 2 open hearts. It is scary it is hard but he is the light of my life. I am so glad they found it thru pulse ox..cause he was not daughter COULD OF been sent home with the worst outcome...but it was found and we are grateful! I do believe there needs to be more awareness about finding chd's and more medical research and I believe it is happening...atleast for me...I never knew HOW MANY! Btw my lil grandson is named Evan and turns 1 in one week!! He is active happy smart and the most affectionate baby I have ever seen. Let's exchange prayers for our Evans? Ruth I am so sorry from the bottom of my heart for your loss of lil sweet Corbin. Ruth thank you for all you do in his name for all of us, you are an amazing woman !!