Man who had 6 open heart surgeries for rare condition celebrates organ donor

A man who was born with a rare heart condition and had 6 open heart surgeries – the first at just 10 days old – is celebrating the power of organ donation this World Heart Day (29 September 2026), after a heart transplant allowed him to go on to marry and become a father.

Kev's story

Kev Rands, 41, from Southampton, was born in November 1984. At just 10 days old, his mother noticed he wasn't feeding and sought medical help.

Kev was diagnosed with a congenital condition that meant his heart had a double inlet left ventricle, causing blood to be pumped away from his heart but not return quickly enough.

He had his first open heart surgery that same day, at just 10 days old and spent his first weeks, including his first Christmas, in hospital.

"I was born at a time when there were no scans during pregnancy, so nothing had been discovered in advance, it was only when my mum noticed that I wasn't feeding properly that she called the midwife, who said things didn't look or sound right.

"She called the GP, who sent us to the hospital. It all escalated very quickly and before we knew it, I was in theatre and didn't leave the hospital again for a month. Having children of my own now, I can only imagine how scary it all was for my parents."

At the age of 2, Kev needed a second surgery, when his parents noticed that he was very blue. He went on to have a further 12 surgeries throughout his childhood and adolescence, each one to help his heart to function for just a few more years.

"I was having surgery really regularly. I had coils, stents and pacemakers fitted, when my heart blocked, a mechanical heart valve was fitted and then a donor heart valve. They did everything they could possibly do, but nothing was a cure – I think we knew that eventually, I'd need a transplant.

"It was a chaotic childhood and adolescence, school was tricky because I was in hospital a lot, often for 5 to 6 weeks at a time. I was very tired, my medication made me feel unwell, my baby teeth went black and fell out, I had blood clots. It was difficult, but I had good friends - they would come and visit me in hospital, cheer me up."

Throughout his teenage years and into early adulthood, Kev continued to have regular surgeries and at the age of 23, he was added to the waiting list for a new heart.

"I was told that it would be hard for me to find a donor match because I had that many antibodies from surgeries and blood transfusions. I had had a Fontan procedure, which, along with all of the other procedures, made the actual transplant a lot more difficult to perform.

"So the wait was hard, I didn't know if my match would come or if it did, if the surgery would go well. I was struggling – I was on oxygen, struggling to walk up the stairs, just waiting for a phone call.

"I got the call a few times, so I'd get ready to go then get a call saying that they'd done the crossmatching and the heart wasn't suitable. After 2 years, I asked to be taken off the list, it was all too much."

After 6 months off the list, Kev's heart valve closed up and he needed emergency surgery. He spent three months in hospital and made the decision to rejoin the transplant waiting list. He had to stay in hospital until a match was found, which happened just a week later.

"I'd expected to be in for a long time. I'd packed so much stuff."

I'm so grateful to my donor's family for making the decision that they did. Their generosity has saved my life and given life to my 2 children.

Kev had his heart transplant in May 2012 at the Freeman hospital in Newcastle, 320 miles away from home, after a total of five years on the waiting list. Now, fourteen years later, he's doing well and is married with two children of his own.

He met his wife two years after he'd been added to the transplant waiting list - "I knew she was the one because she kept coming to visit me at the hospital. She got a season ticket for the carpark!

"When she got pregnant, we were worried that maybe the children would be born with the same condition I had but thankfully, both are fine."

Kev's donor was a young male, who helped others, too. Kev has written to the family.

"I'm so grateful to my donor's family for making the decision that they did. Their generosity has saved my life and given life to my two children. I want them to know that I've used their gift positively and that I'm grateful for them every day.

"Organ donation is life-changing – it's not just me that's benefited, but the people around me, too. It's an incredible gift and I would urge everybody who can to consider what your decision around donation might be.

"I was defined, as a child, by my condition. Now I don't need to be defined by my illness and I can just lead a regular, everyday life, which is exactly what I want to do."

How you can help

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

"Kev's story is truly remarkable and really showcases just how important organ donation is. By making that decision, offering that precious gift, you are transforming the life of somebody on the transplant waiting list – and also the lives of the people around them.

"This World Heart Day, we encourage everybody to think about their donation decision and confirm it on the NHS Organ Donor Register. We're in a critical moment for organ donation, with the transplant waiting list at its highest ever level and nine people dying every week while they wait for an organ.

"Most of us would accept an organ if we needed one but opportunities to save lives are being lost because families didn’t know what their loved ones wanted. Leave them certain – use the NHS app or search NHS organ donation to confirm your decision on the NHS Organ Donor Register. It takes 2 minutes and could save up to 9 lives like Kev's.”

NHS Blood and Transplant recently announced that it has moved into an urgent footing for organ donation, as a result of a significant and accelerating decline in organ donation and transplantation across the UK and is encouraging 1 million people to confirm their donation decision on the NHS Organ Donor Register before the end of the year.

Families are much more likely to consent to donation when they know what their loved one would have wanted – donation proceeds in around 90% of cases where a decision has been shared. This figure drops to below 50% when there is no known decision.

Donation can only go ahead with the family's support but the family consent rate across the UK has dropped by almost a fifth in the last 5 years, to just 57% in 2025/2026 and there have been over 2,000 lost opportunities for transplant since April 2021, because families didn’t know what their loved one wanted.

You can register your organ donation decision online, call 0300 123 23 or use the NHS app.