From the outside you’d never know it.

But this little warrior, has the battle scars to show it.

An incision down the chest, sometimes the only way you can tell.

That this tiny hero, has been through hell.

Resonating still, the moment when CHD was discovered.

The following words, slowly uncovered.

“Please sit for what I’m about to say, I’m sorry to tell you this; there’s something wrong with your baby’s heart today.”

That moment, impossible to forget.

That moment, when you learn to live life without regret.

Filled with fear, heartache and worry.

Time standing still, yet moving in a flurry.

CHD knows no bounds.

It appears in utero, but sometimes it’s not immediately found.

1 in 100.

Affecting a lot more than you know.

CHD is silent, taking little beautiful lives as it goes.

It’s the number one cause of childhood death, something all CHD parents fear.

This is a reality, and we cherish our babies and hold them near and dear.

“So they’re fixed now, right?” we hear after a surgical correction.

Unfortunately, no. There is no cure to restore their tiny broken heart to a state of ultimate perfection.

“But, how can that be when they appear so healthy?” strangers often say when they see.

But, that’s just CHD being CHD.

Affecting mostly inward, and often, not out.

Sometimes it’s hard to believe the battle these kids are fighting, beyond any doubt.

They’re fighters, heroes and warriors going through so much more than we know.

Their fight is never done, with still so much more to go.

Surgeries, catheterizations, hospital stays, pokes, prods and medication.

If it were our choice we wouldn’t choose this kind of life for our tiny human creation.

We were selected and chosen to be blessed with these miracle babies to love and cherish who teach us so much.

About life, love, strength and resilience.

And never giving up.

The fight isn’t over until we find a cure.

Raising awareness is our first step – that’s one thing we know, for sure.

Next comes funding, research and innovation.

To ultimately find a cure for the next generation.

*Written in honor of the tiny heroes fighting the biggest battles. Share to raise awareness for congenital heart disease*

20 thoughts on “One in a hundred

  1. My little sister had holes in her heart when she was born. They had to do open heart surgery. She had problems since then. I remember being in and out of hospitals with her.


  2. I can only imagine how difficult that is. Even the suggestion my daughter had problems was life altering. Definitely impactful.


  3. Beautifully written and full of love. Thank you for the courage to share this with us all. This is profound and 1/100 means it happens more than we think. Sending love and prayers your way!


  4. I will be praying for your baby. I didn’t know that babies can get heart disease too. I pray for strength and healing over your baby. Thanks for sharing your story with us.


  5. Amazing article. You were chosen to be his mom because you can handle this and make sure he gets everything he needs. Hugs to you and your family. You got this and he is a lucky little guy because of it


  6. This is great. As someone who has a rare congenital heart defect, and was born when there were no antenatal scans etc I know I am very lucky to be living the life I do. Good luck to you & your baby xx


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