Learn About Callie's Journey with CHD

My photo
Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Monday, February 7, 2011

Congenital Heart Defect Awareness Week

It's CHD week, help spread awareness! You think you have it bad, take at look at the picture below of Miss Callie and now tell me how bad you have it!
Help spread awareness this week, here are a few facts about CHD:

•Congenital Heart Defects are the #1 birth defect.
•Congenital Heart Defects are the #1 cause of birth defect related deaths.
•Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
•The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.
•This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
•Though research is ongoing, at least 35 defects have now been identified.
•4-8% born with CHD have Hypoplastic Left Heart Syndrome
•4-10% born with CHD have Atrioventricular Septal Defects
•8-11% born with CHD have Coarctation of the Aorta
•9-14% born with CHD have Tetralogy of Fallot
•10-11% born with CHD have Transposition of the Great Arteries
•14-16% born with CHD have Ventricular Septal Defects

By the way, Callie's defect didnt even make it on the list, just shows you how rare Callie's defect really is.



What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held her, I'd waited so long,
It's knowing that I need to help her grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking her sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do her nails look blue?
It's cringing inside at what she's been through.
It's dozens of call to her pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching her sleeping her breathing is steady.
It's surgery day and I'll never be ready.
It's handing her over, I'm still not prepared,
It's knowing that her heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that she'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching her chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little girl who loves playing with her babies,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.
This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)