A Year That Changed Us Forever: Carson’s Heart Journey
By Amy Spillar
One year ago, we experienced the hardest day of our lives.
I can still picture it clearly, handing our three-month-old son over to the surgical team and watching them wheel him down a long hospital hallway. Knowing he was headed into open-heart surgery and not knowing what the outcome would be was the most terrifying moment we have ever faced. A piece of my heart went with him that day.
But our story began long before that.
At our 20-week ultrasound, we learned that Carson had a congenital heart defect called an AV Canal Defect, something commonly seen in babies with Down syndrome. In that moment, our future suddenly felt uncertain. I worried about his diagnosis, his heart, and all the unknowns that lay ahead. I wondered how our lives would change and whether I was equipped for the journey before us.
The moment he was placed on my chest, so many of those fears faded away. He was perfect. What replaced my fear was an overwhelming sense of love and protectiveness that I will carry with me forever.
After spending 19 days in the NICU, we were finally able to bring him home. Those first weeks felt like such a gift. We were finally together as a family. But during a follow-up cardiology appointment, we learned his oxygen levels were dangerously low. What we initially thought was a virus turned out to be complications from his heart condition.
That day, Carson was taken by ambulance and admitted back to the hospital.
We didn’t know it then, but he wouldn’t come home again before surgery.
The weeks that followed were some of the most difficult of our lives. Leaving our baby at the hospital every night and driving home without him was heartbreaking. We spent our days traveling back and forth, trying to balance caring for our preschool aged son back home and trying to be as present as we could for Carson.
Then came the day we had dreaded for months.
Watching Carson disappear down that hallway changed me forever. No parent imagines walking that road with their child. The experience has a way of stripping life down to what truly matters. It teaches you how fragile life can be and how precious every moment really is.
Thanks to an incredible surgeon and cardiac team at Stanford Children’s Hospital, his surgery was a success. We will always be grateful for the doctors, nurses, and specialists who cared for our tiny baby with such skill and compassion.
Our faith in God carried us through the darkest days and we felt His peace throughout this journey. Our friends and family came together to support us with prayers, words of encouragement, hospital visits, and meals.
Our brave little boy faced surgery, recovery, therapies, and countless challenges with a resilience that continues to amaze us. Over the past year, we’ve watched him grow stronger every day.
In many ways, this journey changed all of us.
It broke me and rebuilt me in the most beautiful way. It taught me to slow down and appreciate the little things. The things that once felt ordinary now feel extraordinary.
Carson has taught us more than we could ever teach him. He has shown us that differences should be celebrated, that disability is not something to fear, and that joy can be found even in the most difficult seasons. He has made our family better in ways I never could have imagined.
Today, one year after his heart surgery, Carson is thriving. His heart is stronger than ever, and watching him grow, smile, laugh, and light up every room he enters has been the greatest gift of our lives.
Happy 1-Year Heartiversary, Carson.
Thank you for reminding us every day what truly matters. May you always know how deeply loved and cherished you are. We love you more than words could ever express.
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