Heart Heroes

Tuesday, January 31, 2012
This blog has evolved from its original intent of just keeping family and friends up-to-date on our Evie as she courageously battled her broken heart in the scary first months and years of her life.  It was an easy way to circulate prayer requests….and pray you did!

Transposition of the Great Arteries

This is no longer simply a chronicle of tests and procedures and frightening diagnosis.  The blog today is peppered with more Pinterest projects and embarrassing mishaps in our life with 6 little monkeys than anything else.
Aside from a silver scar that peeks out above her dress, you would never know Evie was a “heart” kid.  Most days are care-free and our Evie lives a normal, rambunctious, energetic life of a four year old, reading Fancy Nancy, dressing up in tutus, applying princess band-aids to skinned knees, playing baby dolls and manicures with hot-pink polish.

Maggie Jane
Double Inlet Left Ventricle, TGA & Interrupted Aortic Arch

 But never far from our mind is the road that brought her to where she is today.  Congenital Heart Awareness Week approaching February 7-12th, and I just had to share some of the faces that are my heroes.  Did you know that 1 in every 100 babies is affected by some kind of heart defect?  Its the #1 birth defect and is far more common than you would believe.  Less than 10% of defects are diagnosed before birth.  In America alone, 4,000 babies will not live to see their first birthday because of CHD’s.  CHD’s are responsible for 1/3 of all infant defect-related deaths.  There is a board that has started on Pinterest to raise awareness and share some of these amazing children (and adults) stories.  I was literally in tears looking at the dozens and dozens of faces….beautiful precious children, that have bravely battled broken hearts.
So sobering.

Megan 8 years old
ASD, PDA & Bicuspid Aortic Valve

Caden 6 months
Aortic Stenosis and Coarctation of the Aorta
Complete Heart Block

For you heart mommas, there are instructions on the board for how to post a picture of your own little warrior!

Pin their stories.
Share their courage.
And expectant mommas,  HAVE YOUR NEWBORN SCREENED….ask for a pulse-ox screening.  Its inexpensive, non-evasive and it saves lives!!

Here are a few of the little lives battling the beast known as CHD!
Pinterest Faces of CHD Board

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