On November 6th 2004, my son Braeden was born with Hypoplastic Left Heart Syndrome. He has had three open heart surgeries, two heart caths, a g-tube placement, and countless echos and blood draws. He has recently been diagnosed with Kabuki Syndrome(which is also extremely rare) Despite so many obstacles, Braeden is a happy seven year old today. One in every one hundred children will be born with a heart defect.
You came home with a big red heart,
That you had made at school,
You wrote your own name in the middle,
You asked me...mom isn't it cool?
"It's beautiful," I said to you,
As pride swelled in my chest,
"When it comes to paper hearts,
Yours really is the best."
The glitter and lace,
A mirrored reflection,
So carefully placed,
In sincere perfection.
I think about your "real" heart,
On the inside, where others can't see,
It won't ever be "perfect",
You have a CHD.
You are that one in one hundred,
We'll never know what to expect,
Our lives have been forver changed,
By the words: heart defect.
A precious baby girl was born,
In nineteen eighty-four,
Her mother surely held her,
Not knowing just what was in store,
Her hopes and dreams were shattered,
By the words that would be spoken,
Her tiny...brand new...baby girl,
Was born with a heart that was broken.
Things were different in that time,
Options weren't as clear,
Although her child did not live,
She is a pioneer.
She named her daughter Stephanie,
You can still read her story today,
She received the first baboon heart,
We call her "Baby Fae."
She was that one in one hundred,
Her family decided to give,
So medical science could progress
And future heart children might live.
A mother and father get out of their car,
Taking their son's tiny hand,
The little boy shifts restlessly,
Too young to understand.
Mommy has fresh flowers,
Dad has a shiny new balloon,
He doesn't know they're for his brother,
Whose young life was taken too soon.
His small hands touch a well worn stone,
He says, "wish you were here."
His parents kneel beside him,
Wiping away every tear.
Their child was one in one hundred,
And now they are living apart,
Countless children die each year,
Due to a broken heart.
The technician tells her to relax,
The gel should still be warm,
She rubs her pregnant belly,
Discomfort has become the norm.
Her husband smiles back at her,
She gives him a quick wink,
Soon they will have their answer,
Will it be blue or will it be pink?
The tech starts to look a bit nervous,
In a flash their are doctors and chatter,
She looks at her husband with tears in her eyes,
Asking, "what do you think is the matter?"
They have become one in a hundred,
Lives now changed by CHD,
The child they have been waiting for,
Will soon need surgery.
She is the miraculous,
Inspiring through strife,
The doctors then weren't certain,
If they could save her life.
She paved the road for many,
Now she helps others cope,
She has grown up with CHD,
She gives each of us hope.
She is one in one hundred,
A life with endless plans,
It's nice to know that someone,
Truly understands.
We are the one in one hundred,
Helping the world to see,
We share, reflect...remember,
One voice for CHD.
~Stephanie Husted
