Navigating Life with Heart: Lleyton and Lilian's journey of strength and resilience through congenital heart conditions

Living with a congenital heart condition is a journey marked by challenges and uncertainty. From Lleyton’s early diagnosis of Tetralogy of Fallot to the ongoing management of Long QT Syndrome—a hereditary condition he shares with his sister Lilian. Their story is one of remarkable resilience. Despite countless hospital visits, surgeries, and the constant need for an AED, Lleyton and his family continue to embrace life with determination, drawing strength from each other and the support of Heart Kids NZ.

Lleyton was born in October 2010 with Tetralogy of Fallot and at 6 weeks old he had his first open heart surgery. He spent his first year of life in and out of hospital with multiple health conditions and had a cardiac catheter procedure to balloon his narrow pulmonary arteries when he was 8 months old. After this, he had another 5 or so cardiac catheter procedures in Starship over the next few years to balloon or place stents, and after he collapsed at school as a 6-year-old he had a reveal device placed under his skin to monitor his heart at all times.

Claire Sword, Lleytons mum, said when he was 2.5 years old they once again handed their little boy to the surgeons to fix his broken wee heart. “It was soon after this, that Lleyton was then diagnosed with Long QT Syndrome, a hereditary heart condition affecting the electrical side of the heart that many of our family have.” Claire also has Long QT Syndrome.

This meant Lleyton would be on lifetime medication and have an automatic external defibrillator (AED) in a bag that goes everywhere with him.

Lleyton became a big brother in 2012 and 2015 to his sisters Stella and Lilian. They were both tested for Long QT Syndrome and at 1 year old it was discovered that Lilian too, had the gene. Lilian also went onto medication and was given an AED to have at home with her, because Long QT Syndrome can cause cardiac arrest.

Lleyton is now 14 years old and just had another open-heart surgery in May, but he doesn't let this stop him from living his life. He is cricket and basketball mad and loves nothing more than hanging out with his mates and has talked about working in the medical field when he's older.

Lilian is now 8 years old and thankfully having Long QT Syndrome hasn't had too much of an impact on her life thanks to her medication. She was lucky enough to attend the Heart Kids NZ camp this year and loved meeting other heart kids like her. She loves hockey and dancing and creating anything she can craft with she will! She is empathetic and so caring, which Claire puts down to being born into a family where her big brother faces so much.

Claire said their family life to many might seem chaotic, filled with hospital appointments and worry about the future but they are so thankful for the opportunities they have been given and the people they have met throughout this journey too.

“Heart Kids NZ has provided us with support, resources, advice, knowledge and connection with other families, but most importantly hope. I remember the first Heart Kids NZ event I attended when Lleyton was this tiny little baby, blue with low oxygen saturation and an NG tube in his nose to feed him.”

Claire said seeing the older heart kids running around and having fun, smiling, laughing and living life gave them so much hope. “And now I look at Lleyton and Lilian, and all they have been through, and hope that their journey now inspires others embarking on theirs, just like it did us.”

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