'I died for 17 minutes - I didn't see a light but had a chilling realisation'

Victoria Thomas was in the middle of boot camp at the gym when her heart stopped beating.The netball-loving sports enthusiast had started to feel exhausted after a weightlifting session.

She recalls: “I said to my friend that I didn’t feel like I had any power orenergy, like it had just drained from my body. I was also feeling slightly dizzy. I’d only just said it when I suddenly collapsed on the floor.”

The 35-year-old accountant had gone into cardiac arrest. An ambulance arrived within minutes and paramedics started CPR– but as the clock ticked on with no result, fears rose that Victoria’s heart had stopped for good.

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She says: “When it happened, it went black and there was nothing, then I became aware of looking down on my body.

"I was floating near the roof and was looking down at myself on the gym floor. My first thought was that my legs looked really fat.“And when I looked at a photo of myself taken just minutes before I collapsed, I could see that my legs were actually swollen.

“I didn’t see a light, or feel peaceful, I was just watching myself, and I could see some yellow machines around me.” Eventually, after 17 minutes, Victoria’s heart sprang back into life.

Now 41, she says: “They never gave up on me. The minutes ticked by, but they refused to stop trying. I was so young, fit and healthy and it had come completely out of the blue.” Victoria was taken to Bristol Royal Infirmary, where she spent three days in a coma.

Again, she pulled through and doctors fitted her with a defibrillatorto restart her heart in the event her body went into cardiac arrest again.

Victoria, who has no family history of heart problems, was allowed home, but over the next few months her heart stopped on several occasions, with the defibrillator shocking it back into rhythm each time.

She says: “I went back to playing netball three weeks after it happened, with my defibrillator. It was a shock whenever it went off, but it allowed me to carry on living my normal life, which I was so grateful for.”

And in February 2021, Victoria discovered she was expecting a baby.

She says: “Being pregnant was wonderful, but it put pressure on my heart and I started going intocardiac arrest regularly – although the pacemaker would kick in.”Victoria was 24 weeks pregnant when she was given a reason for the repeated cardiac arrests.

Specialists had diagnosed Danon disease – a rare genetic disorder,thought to affect fewer than a million people worldwide.It is caused by a problem with the LAMP 2 gene, which produces anenzyme that is responsible for a process that keeps cells clean and healthy.

Life expectancy for those with the disease is 19 for men and 24 for women.

Victoria is the first person in her family to have Danon disease.

She says: “When I read the letter from the genetics team telling me what I had, I was 24 weeks pregnant with Tommy and I was so shocked, I couldn’t take it in.

“The doctors wanted to deliver Tommy at just 24 weeks, but I persuaded them to let me hang on a few more weeks. If he had been born at 24 weeks then he may not have survived.

“But by the time I was 30 weeks I couldn’t breathe properly because of the fluid build up around my body, so I had to have an emergency caesarean.”

Thankfully, newborn Tommywas fine. Victoria says: “It was so amazing to be a mum and to hold Tommy in my arms after everything.”But Victoria, who is now a single parent after splitting up with her boy’s dad, discovered her heart had been damaged further by the pregnancy.

By the time Tommy was six months, she was so breathless that even getting up the stairs was a massive struggle.In April 2022, a hospital check-up found her heart was functioning at just 11%,meaning she was experiencing end-of-life heart failure.

She says: “I asked the doctors how long I had left and they told me I had just another couple of months.“It was devastating. All I could think of was Tommy. I vowed I wouldn’t leave him.”

Victoria was put on the urgent donor register. She says: “I had to stay in hospital, and when my sisters brought him in to see me I would cuddle him and cherish every moment I had with him.

“Time was running out for me,and I had to pray that they were going to find me a heart in time. Two hearts were found – but further tests revealed they weren’t suitable."

Victoria, who lives in Gloucester, says: “It was devastating. Each time I’d get my hopes up thinking this was it, that I was going to be saved.

"And then I was told that the operation couldn’t go ahead. I didn’t know if they were ever going to find a heart in time.I’d given up all hope.”

But in April 2023, finally a suitable and usable heart was found.Victoria had the transplant at the Queen Elizabeth Hospital in Birmingham. The surgery was a success and she was allowed home that May.

She says: “I’d been in hospital since Tommy’s first birthday in October and now I was finally home with him. I couldn’t believe it.” Apart from a few episodes of initial rejection, Victoria is now back to full strength.

She is also back to beingsporty, playing netball four times a week, and she is due to compete in both volleyball and basketball at the World Transplant Games in Germany next month.

She says: “After the transplant, I didn’t think I was going to be able to play sports again.

"However, I was introduced to the British Transplant Games and that opened my eyes to the fact I could do exactly what I wanted.

“I played volleyball and I was picked for them to play for the British team.

”Tommy is now three, and tests have shown he does not have Danon disease. Checks havealso put Victoria’s other relatives in the clear.The mum is grateful to her donor’s family,and hopes that they get the chance to see that she has done something amazing with the brave decision they made at a terrible time.

She adds: “I’m spending time as a mum with my son and I’m back playing the sport that I love. I feel like I’ve been given a second chance at life, and to be a mum. It’s the greatest gift I could ever have asked for.”