Welsh dad shares life changing experience of organ donation this Father’s Day

Nation Cymru staff

A man who was diagnosed with a heart condition at three-months-old, told he likely wouldn’t survive to his first birthday and went on to have two life-saving heart transplants, has said that his son being diagnosed with the same condition was “the worst day of his life”.

He is now urging people to confirm their organ donation decision, saying to do so would be “the best Father’s Day gift I could receive”, as his son may also face a transplant in the future.

Rhys Llewellyn, 40, from Aberdare, Wales, was diagnosed with dilated cardiomyopathy as a baby, after his parents noticed he struggled with his breathing and was not gaining weight. Consultants said it was unlikely that he would reach his first birthday.

Thirty-five years later, in November 2020, Rhys was the parent being told of his own son’s diagnosis, as checks revealed that baby Albi Rhys had the same condition, which affects the heart’s ability to pump blood.

Rhys says: “Finding out that Albi has the same condition as I do was the worst day of my life. 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.

“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. I don’t want it to be that way for anybody, but especially should Albi ever have to be added.”

Despite the consultant’s prognosis, Rhys went through his childhood in good health, taking medication, having regular checkups and unable to take part in some activities, including rugby and football. He passed his GCSEs, started working, passed his driving test and went on holidays.

But in 2011, he started to feel weak and tired, looked pale and suffered from dizziness, headaches and regular chest infections. A check-up revealed 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. 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 got his first transplant but five months later, narrowing was discovered in the arteries. He had three stents fitted and eight weeks later, climbed Mount Snowdon. For the next 10 years, he continued to live life to the fullest and met his fiancée, Sarah. In 2019, a routine appointment showed that the narrowing in the arteries was getting to a dangerous level and introduced the idea of a second transplant. He was added to the transplant waiting list in December 2019.

In November 2020, while Rhys was still waiting for a transplant, his first child, Albi, was born. Just after his first birthday, in 2021, Rhys received his second transplant.

“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. 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.

“Thankfully the operation went to plan, but the heart didn’t work as it should straight away and I was very ill. I was in hospital for nine weeks. It was the middle of Covid restrictions, so I didn’t see Albi for 47 days. The day I got to see him again was emotional, it felt like another step closer to normality.

“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. 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.

“The best thing to come out of my first transplant was Albi and the best thing about my second transplant, is being able to be a father, to watch my son grow up and nurture him. I saw his first day in school and I’ve seen him take part in school concerts and sports days. I try to be the best father and partner I can be. I’m lucky that I can have goals and dreams like everyone else, thanks to the gifts given to me.”

Rhys added: “Albi is doing great at the moment, but my worry is that one day he may have to go through all of this. He might follow my journey and we’re all going to have that wait for a heart to become available for him.

“The transplant waiting list is at its highest ever level and we simply don’t have enough donors. 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.”

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, says: “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’.”

Wales has an opt out system for organ donation, also known as deemed consent. This system was introduced in December 2015.

Under the deemed consent law, it will be considered that you agree to become an organ donor when you die, if:

• you are over 18
• you have not opted out
• you are not in an excluded group

Organ donation is your decision. You can choose which organs to donate or opt out of donation altogether.

You can also nominate up to 2 representatives to make the decision for you. These could be family members, friends, or other people you trust, such as your faith leader.

To find out more, and to register an organ and tissue donation decision, visit organdonation.nhs.uk, call 0300 123 23 or use the NHS app.