Proud mum, Nicolle, shares Tommy’s emotional story:
At our 20-week scan, our excitement quickly turned to fear. We were told our baby boy had heart abnormalities. Scared and overwhelmed, I burst into tears and asked the question no parent wants to: “What does this mean?”
We were immediately referred to a specialist children’s hospital for further scans. It was there we learned our baby had hypoplastic left heart syndrome (HLHS) and a ventricular septal defect (VSD)—two serious congenital heart defects.
We were given three options: termination, palliative care (no treatment), or surgery.
For us, there was no question—we chose to fight for our baby boy, to give him the chance he deserved.
We were told I would need to give birth at a heart centre. Not only were we grappling with the diagnosis, but we had to leave our home and our two daughters, aged 13 and 6, in the care of their grandmothers.
It was heart-breaking. But from that moment, we knew his name—Tommy, or as we lovingly call him, Tommy Trouble.
Tommy’s Arrival – A Fighter from the Start
Tommy was born in March 2025. He was immediately taken to NICU to be started on prostin, a hormone that helps keep a critical blood vessel (the ductus arteriosus) open to support circulation until surgery could take place. That same night, he was transferred to PICU.
We were lucky to be given accommodation through Cots for Tots Grand Appeal, which allowed us to stay close to him. Still, having to leave our baby in PICU each night was devastating.
At just four days old, Tommy underwent open heart surgery—the Norwood procedure. We were told it could take up to 12 hours. I felt numb that morning. I couldn’t eat or speak—I just wanted him back in my arms.
After ten agonising hours, we saw him again, his tiny chest still open post-surgery.
That night, he was rushed back into surgery to relieve pressure on the heart. The next day, they were able to close his chest.
Post-surgery
Tommy faced many complications: a blood clot in his neck, chylothorax, and multiple medications to help his heart function. But in true Tommy Trouble fashion, he showed his strength—pulling at his ventilator, medicine lines, and NG tube. He was determined to fight.
Coming Home, Learning to Cope
Five weeks post-op, we were transferred closer to home. There, we completed home monitoring training, basic life support, and NG feeding and pump training.
A week later, we were finally home with our daughters, making memories and adjusting to our new normal—one filled with love, adventure, and lots of hospital appointments.
Another Setback – Another Fight
Six weeks later, we returned to hospital for a diagnostic catheter in preparation for Tommy’s next surgery—the Glenn procedure. It was meant to be a day trip, but things took a terrifying turn.
Tommy was rushed to PICU, intubated, and taken into theatre for temporary pacemaking wires. We were told to prepare for the worst.
This time, we stayed at the Ronald McDonald House, another lifeline for parents like us. Tommy then contracted rhinovirus, complicating his recovery.
After a week in PICU, we were stepped down to HDU, then transferred back to the ward, and finally—home again.
Looking Ahead
We are now treasuring every moment at home, making memories with our daughters, and hoping Tommy stays well until his next open heart surgery—planned towards the end of this year.
Through it all, Tommy has shown us what real strength looks like. He’s lived up to his nickname in every way—mischievous, spirited and full of fight.
He is our warrior, our light, our little miracle.
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