Kate and Tommy’s journey began in 2022, when she discovered her unborn baby had transposition of the great arteries (TGA). Now, as Tommy approaches important milestones, Kate reflects on their life today and shares how she copes with the anxieties that come with each new step forward:
As Tommy approaches his second birthday, I find myself reflecting on the incredible journey he—and we—have been on. I find it hard to believe that nearly two years ago, our world was turned upside down when Tommy was born with transposition of the great arteries (TGA).
His early weeks were filled with uncertainty, fear, and strength. His birth was wonderful, but soon turned traumatic. He spent his first three weeks of life in the PICU, including time on ECMO and his life-saving TGA switch operation. Those first weeks were some of the hardest we’ve ever faced.
But today, we’re so grateful to say: Tommy’s heart is “fixed.” He’s thriving. He’s full of energy, curiosity, and joy. His check-ups are now annual, and each one reassures us that his heart is doing well. Watching him grow into a happy, healthy little boy is nothing short of miraculous.
Still, as his birthday and “heartiversary” approach each year, I find myself revisiting the emotions of those early days. The anxiety creeps in—memories of monitors beeping, waiting rooms, and the overwhelming fear of the unknown. This milestone is bittersweet. It’s a celebration of how far Tommy has come, but also a reminder of the trauma we all went through.
To manage that anxiety, I’ve learned to give myself space to feel. I look back at photos and videos of our five weeks in hospital, I talk to other heart parents, and I allow myself moments of quiet reflection. I’ve also found comfort in creating new traditions—dressing him in hearts on his heartiversary, looking through photos of his recovery, and celebrating the strength of our little rockstar. These help transform the pain into pride and gratitude.
We wanted to take a moment to say a heartfelt thank you to Tiny Tickers and the incredible heart community. Whether you’ve read our story, shared your own, or simply been there for families like ours—you’ve made a difference. Your support helped us feel less alone during our darkest hours. Knowing that others understood, that others had walked this path, gave us hope when we needed it most. I hope Tommy’s story gives others hope.
To anyone out there navigating a diagnosis, surgery, or the long road of recovery: you’re not alone. There is a community here that cares deeply and understands.
This year, we will be going on holiday on Tommy’s birthday, and he is very excited to go on a plane and turn two. I am overwhelmed when I see him doing normal things like playing with his brother, going to nursery, and reaching the milestones that, at one point, we didn’t know if he would reach.
Read Tommy’s full story here.
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