In a world where every parent hopes for the best for their child, few are prepared for the shocking news that can shake them to their core. Louise and Daniel’s journey with their son, Finley, began with a routine scan at 20 weeks, but what they learned that day would change their lives forever. Their precious baby boy was diagnosed with a complex and rare heart condition: tricuspid atresia, a VSD (ventricular septal defect), and pulmonary stenosis.
The discovery came as a complete shock. The doctors couldn’t see all four chambers of Finley’s heart during the scan, and after a second, more detailed scan, the diagnosis was confirmed. Tricuspid atresia is a severe congenital heart defect where the tricuspid valve, which controls blood flow between the right atrium and right ventricle, is absent or underdeveloped. This condition makes it incredibly difficult for blood to flow properly through the heart, causing strain on the lungs and the body. For Louise and Daniel, this news was not just frightening but overwhelming.
Despite their initial shock, they held onto the hope that Finley could still have a fighting chance. They were prepared for a difficult journey, but the challenges ahead were far greater than they had ever imagined. The couple’s faith, love, and determination carried them through what would become the fight of their lives.
When Finley was born in October 2020, the relief of hearing his cry for the first time was overwhelming. But the joy of his birth was short-lived, as his oxygen levels began to dip, and he was immediately placed on medication to support his heart. Within hours, Finley’s condition worsened. His heart was struggling, and at just 12 days old, he was transferred to a specialist hospital for life-saving surgery. It was there that he received a stent to keep his ductus arteriosus open—critical to maintaining the flow of oxygenated blood to his body. The procedure was risky, and Louise and Daniel feared the worst, but their little fighter pulled through, showing incredible resilience from the very beginning.
The uncertainty of Finley’s future loomed large, but with each day, they witnessed his strength. Despite facing life-threatening challenges, he fought with a courage that left his parents in awe. Throughout their journey, they found comfort in support groups, especially the Tiny Tickers parent and carer support group, which connected them with others navigating similar heart journeys. These connections helped them feel less isolated, offering the strength to continue.
Finley’s heart journey was far from over. The next battle came in the form of his Glenn surgery, a crucial procedure to help improve his heart function. At just a few months old, Finley underwent this complex surgery, and though he was on a ventilator for several hours afterward, his recovery was nothing short of miraculous. The success of the surgery was a moment of immense relief, but their journey would soon take another unexpected turn.
As Finley continued to fight for his life, new complications arose. He developed chylothorax, a condition where fluid leaks from his chest drains, requiring him to follow a strict low-fat diet for six weeks. For most children, this would have been difficult, but for Finley, whose sensory issues made eating challenging, this posed an even greater obstacle. Yet, with the unwavering support of his parents, he persevered.
As months went by, Finley’s progress was steady but not without setbacks. His next major hurdle came when he needed to undergo his final stage of palliative surgery, the Fontan procedure. The surgery was fraught with complications, including a tear in his heart during the procedure, and a prolonged recovery that required life support. Finley’s doctors were clear about the risks, but they were also determined to help him overcome them. Even with these terrifying challenges, Finley’s spirit remained strong. Against all odds, he continued to fight, showing everyone around him what true resilience looks like.
By the time Finley was almost a year old, he had faced more than most children will in a lifetime. But through it all, he had reached a remarkable milestone. He was thriving—gaining weight, reaching developmental milestones, and even starting primary school in a resource provision setting. The day he walked into school with his backpack on was a moment of pure pride for Louise and Daniel. It was a testament to their son’s strength, the power of their love, and the incredible will to live that he had shown from the very beginning.
Now, at the age of five, Finley continues to defy expectations. He is a shining example of strength, hope, and resilience. His story is one of incredible struggle, but also of triumph. His heart condition may have shaped his journey, but it has not defined him. Every day, Finley’s parents are reminded that their son is not just a survivor; he is a fighter—brave, strong, and full of life.
Finley’s journey is far from over, and there are still challenges ahead. But his parents know that with each step, with every milestone, their son is rewriting the story of what is possible. His strength has inspired everyone who has met him, and his parents’ unwavering commitment to his well-being continues to fuel their determination.
In sharing Finley’s story, Louise and Daniel hope to raise awareness about congenital heart disease and the incredible work of the medical professionals who help children like Finley. They are passionate about ensuring that other families facing similar challenges feel supported and empowered.
For Finley, every day is a victory. And for his parents, his life is a constant reminder that even in the face of the greatest challenges, there is always hope.
