Valentine’s Day is an opportunity to remember the one in one hundred child born with a heart defect. In her heartfelt poem, guest blogger Stephanie Ballard profiles some of the one in one children born with heart disease and the families who are their advocates.

The One in One Hundred Child

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 forever changed
By the words heart defect.

A precious baby girl was born
In nineteen eighty-four
Her mother surely held her
Not knowing 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 the baby did not live,
She is a pioneer.

Her mother named her Stephanie–
You can still read her story today.
She received the first baboon heart.
We call her “Baby Fae.”

She was the 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 is the norm.

Her husband smiles back at her
As 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 there are doctors and chatter
She looks at her husband with tears in her eyes
Asking, “What do you think is the matter?”

They are the one in one hundred
How could they ever expect
The child they have been waiting for,
Would have a heart defect?

We are the one in one hundred,
We did not make this choice,
We share, reflect…remember,
We are our children’s voice.

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