CHD Awareness and an Anniversary...

February 7-14th is CHD Awareness Week. I'm sure if you know me and my little Braden, then you know what a CHD is. But if not, here's a little info on it...

8 years ago today, we were in Palo Alto, CA at Stanford waiting for Braden to come out of his 1st Open Heart surgery. 

Nearly one in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD.


Hugging goodbye and handing your little baby to a nurse if one part of being a HeartMom I wish no one had to experience. 

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined


Harder yet, was the sight on him after nearly 11 hours in the OR. Puffy, swollen and hooked up to so many machines and medicines. 

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 *
 Braden had 4 of them. His defect, we were told was 1 in 1,000,000 among CHD kids


Braden about a week post op with our hero and surgeon Dr. Frank Hanley

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 him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his 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 his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his 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 him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'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 him 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 boy who loves Thomas the train,
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) 

And thanks to Andrea (Owen's Mom), I basically copied her CHD post ;)

For me it' was about finding joy in the journey, leaning on family for support and relying heavily on your faith. It's the tender mercies like finally being able to hold him again after he was extubated on Valentine's Day '03

 It's the rarest of smiles-saved for his Daddy on his Birthday. 

 It's being able to walk out of the hospital a few weeks after you enter it, with hopes of a bright future for a little one who has already endured too much. 

I think sometimes it is easy to focus on the sad, negative part of having a child with a CHD. But I truthfully believe we were given Braden to bring our extended family together, make Rusty and I fiercely protective parents, and it grew our testimony in Christ to a level I never knew existed. 

Braden buddy, I love you. I am so proud of you and that I get to be your Mom.  You are so smart. You get to play sports, and you love to read. You are very close to not just aunts, uncles and cousins but your 4 grandparents and great grandparents too. You are loved and prayed for by people all over the world.

Happy 8th Heart Anniversary

You can read more of Braden's story here.