A young, fit mother has shared her extraordinary journey of survival after her heart stopped for 17 minutes during a gym session, leading to the discovery of a rare genetic condition and an eventual life-saving transplant.
A Sudden Collapse and a Chilling Out-of-Body Experience
In 2019, Victoria Thomas, a 35-year-old accountant and netball enthusiast from Gloucester, was participating in a boot camp at her local gym. After a weightlifting set, she felt her energy drain away and mentioned feeling dizzy to a friend. Moments later, she collapsed onto the floor.
Victoria had suffered a sudden cardiac arrest. Paramedics arrived swiftly and began CPR, but as the minutes ticked by with no response, the situation grew increasingly dire. Victoria recalls an out-of-body experience during the ordeal. "It went black and there was nothing, then I became aware of looking down on my body," she said. "I was floating near the roof... I didn't see a light, or feel peaceful, I was just watching myself."
Miraculously, after 17 long minutes, her heart began beating again. She was rushed to Bristol Royal Infirmary, where she spent three days in a coma. With no family history of heart problems, doctors fitted her with a defibrillator to manage any future arrests.
A Miracle Pregnancy and a Devastating Diagnosis
Victoria returned to her active life, but her heart stopped multiple times, with the defibrillator shocking it back into rhythm each time. Then, in February 2021, she discovered she was pregnant. While joyous, the pregnancy strained her heart, triggering more frequent cardiac arrests.
At 24 weeks pregnant, specialists delivered a shocking diagnosis: Danon disease. This exceptionally rare genetic disorder, caused by a defect in the LAMP2 gene, affects cell health and carries a stark average life expectancy. Victoria was the first in her family to be identified with it.
"I was 24 weeks pregnant with Tommy and I was so shocked, I couldn't take it in," Victoria recounted. She persuaded doctors to delay delivery, and at 30 weeks, due to severe fluid build-up, she underwent an emergency caesarean. Her son, Tommy, was born healthy.
End-Stage Failure and the Gift of a Second Chance
The pregnancy had caused further damage to Victoria's heart. By the time Tommy was six months old, she was struggling to breathe. A check-up in April 2022 revealed her heart was functioning at just 11% – she was in end-stage heart failure and given mere months to live.
Placed on the urgent transplant list, Victoria endured the agony of two potential donor hearts being found unsuitable. "I'd given up all hope," she admitted. Finally, in April 2023, a match was found. She underwent a successful transplant at the Queen Elizabeth Hospital in Birmingham and was discharged home the following May.
Now 41, Victoria has made a remarkable recovery. She plays netball four times a week and has been selected to represent the British transplant team in volleyball and basketball at the upcoming World Transplant Games in Germany. Tests have confirmed that her son, Tommy, now three, does not have Danon disease.
"I feel like I've been given a second chance at life, and to be a mum," Victoria said. "It's the greatest gift I could ever have asked for." She remains eternally grateful to her donor's family for their courageous decision during a time of profound grief.
