Thursday, February 7, 2013

Awareness What?!

Today kicks off Congenital Heart Defect Awareness Week.  I should be pumped up, right?  I should be shouting from the rooftops so others hear that nearly 1 IN 100 BABIES ARE BORN WITH A CONGENITAL HEART DEFECT.  I should be motivated to tell expecting parents that only 50% of CHDs are diagnosed in utero. 

The truth is, I'm not pumped up.  I'm angry.  As much as I love the heart family that has been my life raft for the past three years, I really wish I was still ignorant.  I wish I was one of those people that muttered to myself when seeing a million social media posts, "what the hell is a CHD?"  I wish I didn't feel guilty and brought to tears feeling as though bearing these feelings will do a disservice to my heart sisters.  But I can't help it.

I hate the fact that nearly every single day, for the rest of my life, I'll cross paths with a mother who will watch their child die, watch their child suffer.  Even I, the most strong-willed and stubborn woman, can only endure so much. 

As much as I'd like to retreat from this world.  I cannot.  I have a duty to warn.  A duty to educate.  A duty to empower.  It is my calling.

So, even though I hate you Congenital Heart Defects, with every ounce of my being... I will give you my fullest intention this week, February 7th -14th, so that someday, a mother can look back on this blog and say, "Oh my God, I cannot believe children were dying on a daily basis from heart defects.  Thank God medicine has evolved since 2012 and we don't have to live in that fear."

Zoe Madison, living with half a heart.
My trailblazer.
My inspiration.


  1. Well said Stacey <3 This past year I've connected with so many moms who live CHD and other birth defects every day, feeding tubes, hospital life, staying at RMHs, and when I try to explain it to an "outsider", I then realize how skewed my "reality" is, because I'm now a heart mom and no longer living in blissful ignorance.

  2. Very well said. I love the online networking but this year I'm focusing on spreading awareness in my community. To reach those NOT on my friend's list. Hugs my dear. Great post.

  3. My thoughts exactly. This week I am just mad and am feeling like this whole CHD world is just unfair.