What I Want You to Know About Having a Child With CHD


My daughter was born with a heart condition — a serious one. She had to undergo a 13 hour open-heart surgery when she was just 8 days old.

Imagine how it felt to plan for this while pregnant. Imagine how it felt to decorate her nursery. Imagine how it felt to attend my own baby shower. Image how it felt to baby-proof my home. Imagine how it felt to install her carseat. Imagine how it felt to start the delivery process. And imagine how it felt to hand her over to the surgeons.

You can’t — unless you have been in my shoes.

All of the pain and fear of being a Congenital Heart Defect (CHD) Mom is truly beyond measure. I struggle writing these words as tears incessantly stream down my face and I can barely see my computer screen. But, with all of the pain there also comes immeasurable joy, love, beauty and genuine daily pleasure that I have to find a way to share because I believe this is life’s biggest gift, and I received it early.

As humans we seem to have an innate ability to forget about how fortunate we are until our circumstances change for the worse. From our childhood on, we feel like we are invincible. We feel like we have rights that are given and not earned. And some of us even feel entitled to a certain standard of life. All of these “givens” are stripped away when you hear the words “something is wrong with your baby’s heart.” May you never hear those words, but if you do, be confident there is beauty on the other side.

For those of you parents who have been given the path of a typical pregnancy and a healthy baby, may you read these words and take them to heart: every day is a gift.

I was at a park this past summer with my daughter. We were on a swing set that allowed for two children to swing side by side. It was such a simple moment, but one I will never forget. As I pushed my daughter, her laughter practically echoed through the leaves on the trees, her curly hair glistened in the sun and she kept on shouting, “Yippee! Mommy, go higher! This is so much fun!” I too was enjoying the moment to its fullest. My smile was so big it probably looked unnatural to onlookers and I was laughing along with her, hoping that moment would not end. It was the kind of simple moment, the kind of simple “right” that I so longed for when my little girl’s future was uncertain.

Next to me was another mother with her son. Their interactions different. I walked away wondering if this mother had ever felt what it would be like to lose her child; I hope she never has to endure that pain. But, what if she lived her life in a way where each moment was treated like a gift? Or each moment was something earned? Why do we as humans have to face near tragedy first hand to live this way? I walked away with the realization that if my story were more like hers, perhaps I would not be aware that every moment is a moment to be present. Instead, I have been blessed with a true gift: living in the moment.

I remember going back to the very early days of my little miracle girl’s life and already enjoying this different perspective — this gift. When my daughter was out of her surgery she was on a breathing tube for days on end; it felt like forever. So finally when she could not only breathe on her own, but scream to get my attention, I gladly responded. During the entire first year of her life when she screamed in the middle of the night I didn’t hear crying; I heard strength and healing.

What does it mean to be a CHD Mom? It’s hard, it’s really hard. But there is also cause for constant celebration. I’ll leave you with how I personally view the meaning of CHD:

Congenital Heart Defects
Celebrate Her Determination
Celebrate Her Delight
Celebrate Her Development
Celebrate Her Discovery
Celebrate Her Desires
Celebrate Her Daily
Celebrate Her Destiny

A version of this post first appeared on Medium.

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