A father who survived against all odds after being told he was unlikely to live beyond his first birthday has described learning that his young son had inherited the same life-threatening heart condition as "the worst day of my life". Now, after two life-saving heart transplants, Rhys Llewellyn is urging people to confirm their organ donation decision, saying it would be "the best Father's Day gift I could receive" as his son may one day face the same wait for a donor heart.
A Childhood Diagnosis
The 40-year-old, from Aberdare, was diagnosed with dilated cardiomyopathy at just three months old after his parents became concerned that he was struggling to breathe and failing to gain weight. Doctors warned the family that he was unlikely to survive to his first birthday.
Yet Rhys defied expectations. While regular hospital appointments and medication became a fixture of his childhood, he grew up, passed his GCSEs, learned to drive, found work and built a life many feared he would never have.
First Transplant at 25
But in 2011, his health suddenly deteriorated. Over time, Rhys began to feel weak and tired. He started to look pale and suffered spells of dizziness, headaches and regular chest infections. A check-up would reveal that he was in heart failure and medication could no longer help. He needed a heart transplant, at the age of 25.
"This was a huge shock," Rhys admitted. "I had grown up knowing that a transplant was the only 'solution' for my heart condition but as a family, we never spoke about it. We didn't think it would really happen. I remember sobbing in my bed, thinking that this shouldn't be happening to a 25-year-old."
In October 2011, Rhys received his first donor heart. Although complications developed just months later, requiring three stents to be fitted, he recovered and returned to living life to the fullest - even climbing Snowdon eight weeks later.
A Second Chance and a Son
Over the next decade, he built a future he once feared he might never have. He met his fiancée, Sarah, and together they prepared to welcome their first child. Then, in 2019, routine tests revealed dangerous narrowing in the arteries of his transplanted heart. Doctors raised the prospect of a second transplant and Rhys was placed back on the waiting list. In November 2020, while still waiting for a donor, his son Albi was born.
Just over a year later, Rhys received the call that would save his life for a second time. "As we drove to the transplant centre, I wrote notes and letters to family members, with information like passwords and funeral wishes, in case I didn't make it," he recalled. "It was an anxious, emotional time and there were lots of tears from me. It felt like there was more to lose this time, with having Albi."
The operation was successful, but recovery was far from straightforward. Rhys spent nine weeks in hospital and, because of Covid restrictions, was unable to see his son for 47 days. "The day I finally saw him again was emotional," Rhys said. "It felt like another step closer to normality."
Gratitude and Fear
Today, Rhys is back to living a full life and says every moment with his son is made possible by the generosity of two donor families. "I can now live a normal life and that is only thanks to the extreme generosity of two families, who made that brave and selfless decision to donate on one of the hardest days of their lives," he shared. "I'm extremely grateful. It's because of them that I've been able to have my son – and to continue to be a dad to him."
But alongside that gratitude is a fear he never expected to face. Thirty-five years after his own diagnosis, Rhys found himself sitting on the other side of the consultation room when doctors confirmed that baby Albi had inherited the same heart condition.
"Finding out that Albi has the same condition as I do was the worst day of my life," Rhys stated. "I wanted nothing more for him to not have to go through what I have. At the moment, he's doing really well, but there's a chance that he's going to end up needing a transplant, too and that's a terrifying thought."
A Plea for Organ Donation
While Albi is currently healthy, Rhys knows all too well how quickly circumstances can change. "I've been lucky to have had two separate families agree to a donation that saved my life but I know that we need more people to agree to donation because the transplant waiting list is the highest it has ever been," he said. "I don't want it to be that way for anybody, but especially should Albi ever have to be added."
As Father's Day approaches, Rhys is using his story to encourage families to have conversations about organ donation and to record their decision on the NHS Organ Donor Register. "The transplant waiting list is at its highest ever level and we simply don't have enough donors," he said. "I will never stop talking about organ donation and asking people to confirm their donation decision on the NHS Organ Donor Register. It's crucial that you do so. Knowing that people are doing that, would be the best Father's Day gift I could ask for."
In light of Rhys' story, Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, added: "Rhys' story really showcases the importance of organ donation and the difference it can make – not only have two extremely generous families saved Rhys' life, but they've allowed Rhys to have a son and be a father to him. There is no more precious gift."
"Sadly, not everybody will get this same chance – the transplant waiting list is at its highest ever level and we need more donors than ever before. Confirming your decision to be an organ donor on the NHS Organ Donor Register is crucial – it allows your family to know exactly what you would have wanted and helps them to carry out your final wish. By doing so, you could save up to nine lives like Rhys'."
