Huxley’s journey began long before he was born….
At the routine 20-week scan, a moment most parents look forward to, our lives quietly split into a “before” and an “after.” It was there that doctors diagnosed Huxley with Hypoplastic Left Heart Syndrome (HLHS). In a matter of minutes, excitement turned into fear. We were told the reality with brutal honesty: only around half of children with HLHS survive all three required heart surgeries. Even then, the surgeries are not a cure — they are a way to buy time. A heart transplant could still be part of his future.
The months that followed were heavy with uncertainty. Every day of the second half of pregnancy carried anxiety, but also determination. We chose hope, even when it felt fragile.
At 39 weeks, Huxley arrived via a planned C-section, weighing a strong 8lb 2oz. He looked perfect — but he wasn’t well. There was no moment of holding him close, no quiet introduction to the world. Within minutes, he was taken straight to intensive care and placed on a ventilator. His dad and I watched from a distance, already learning what it meant to love him while letting go.
Before he was even 24 hours old, Huxley underwent his first procedure — a septostomy — creating an opening between the chambers of his heart to keep him alive. I hadn’t even met my son yet. When I finally did, he was a day old, deeply sedated, surrounded by machines, wires, cannulas, and alarms. We were told to focus on one hour at a time.
And slowly, something incredible happened.
Hour by hour, day by day, Huxley began to show us who he was. Within five days, he was breathing on his own without oxygen support. We held him for the first time. We saw his eyes. He met his big sisters, Scarlett and Aria. In the middle of fear, there was light.
At just eight days old, Huxley faced the first of three major open-heart surgeries: the Norwood procedure. Walking him down to theatre was one of the hardest moments of our lives. As we kissed him goodbye, I remember feeling an overwhelming sense of anger. No parent should have to leave their baby knowing their chest is about to be opened.
The surgery lasted 11 long hours. When we finally saw him again, he was almost unrecognisable — swollen, grey, his chest left open to protect his heart. Recovery was critical. Three days later, he was rushed back into surgery for a blood clot on his heart. The words “we need to operate now or he will die” are ones no parent ever forgets.
Once again, Huxley fought his way through.
Thanks to extraordinary surgeons, doctors, and nurses, his chest was closed two days later. A week after that, he moved from PICU to the cardiac ward, where we began training to take him home — tube feeding, medications, monitoring his weight, CPR, and learning to recognise every warning sign.
At five weeks old, Huxley finally came home. But the relief was short-lived. He couldn’t tolerate feeds, and within two days we were back in hospital. Together with his medical team, we decided it was safest for him to remain an inpatient until his second surgery.
At four months old, Huxley underwent his second open-heart surgery — the Glenn procedure. It was shorter, smoother, and for a moment, everything seemed to be moving forward. Then came another setback: chylothorax, a rare condition causing lymphatic fluid to leak into his chest. His recovery stalled. We spent another eight weeks on the cardiac ward, facing complications including sepsis.
Just before Huxley turned six months old, we were finally told the words we had been waiting for — he could go home. This time, for real. It was during the height of the coronavirus pandemic, which added another layer of fear, but nothing compared to what we had already faced.
Today, Huxley is nine months old and thriving. Our home is full again. We are making memories we once feared we might never have. His journey isn’t finished — one more open-heart surgery, the Fontan procedure, still lies ahead, likely when he is between three and five years old.