“Everything went black and there was nothing”: the account of Victoria Thomas, a woman who was without a pulse for 17 minutes

“They never gave up on me. The minutes were passing, but they refused to stop trying.” It was so young, I was fit and healthy, and everything had been completely unexpected,” recalls Victoria Thomas, accountant from Gloucester and sports enthusiast, when recalling the day her heart stopped for 17 minutes in the middle of the gym.

Her testimony marks the beginning of a story of survival, motherhood, and second chances that moves with its rawness and hope.

The year 2019 changed the life of Victoria Thomas forever. At 35 years old, with no family history of heart problems and in peak physical condition, she was participating in a training camp at her local gym when, after a weightlifting session, she began to feel unusually exhausted and dizzy. “I told my friend that I didn't feel any strength or energy, as if it had abandoned me. I also felt a little dizzy. Just as I said it, I suddenly collapsed on the floor,” Victoria told the British media Mirror. The rapid arrival of an ambulance allowed paramedics to begin cardiopulmonary resuscitation maneuvers. However, the attempts seemed unsuccessful. The heart of the young woman remained stopped for 17 minutes. In that time, Victoria experienced what many describe as a near-death experience. "When it happened, everything went black and there was nothing, then I realized I was looking down at my body. I was floating near the ceiling and looking at myself on the gym floor. The first thing I thought was that my legs looked very fat. And when I saw a photo of myself taken minutes before collapsing, I saw that, in fact, my legs were swollen. I didn't see any light or feel at peace. I was just observing myself and could see some yellow machines around me," explained Victoria. Thomas's heart started beating again. She was transferred to the Bristol Royal Hospital, where she remained in a coma for three days. Upon waking up, the doctors implanted a defibrillator to restart her heart in case she suffered another arrest. Despite the seriousness of the episode, Victoria quickly resumed her active life. "I went back to playing netball three weeks after it happened to me, with my defibrillator. It was a shock every time it went off, but it allowed me to continue with my normal life, so I am very grateful," she shared. However, the apparent recovery concealed a deeper problem. In the following months, her heart stopped again on several occasions, although the defibrillator managed to restore the rhythm each time. In 2021 Victoria became pregnant. “Being pregnant was wonderful, but it put pressure on my heart and I began to suffer cardiac arrests regularly, although the pacemaker was activated”, she said.

During gestation, at 24 weeks, specialists informed her of the underlying reason:  Danon disease. According to the National Institutes of Health of the United States (NIH), "it is a rare genetic condition characterized by the weakening of the heart muscle (cardiomyopathy) and the muscles used for movement (myopathy of skeletal muscles) and intellectual disability".

"This disease is a type of lysosomal storage disorder. Lysosomes are compartments within the cell that use enzymes to break down large molecules into smaller molecules that the cell can use," described the NIH. Regarding the moment of diagnosis, Thomas recalled in a conversation with the Mirror: “When I read the letter from the genetics team telling me what he had, I was 24 weeks pregnant with Tommy and I was so surprised that I couldn't take it in”. Faced with the medical suggestion to terminate the pregnancy, Victoria asked to wait. At 30 weeks, the accumulation of fluids complicated respiratory function and the doctors indicated an emergency C-section.

Terminal Heart Failure and Urgent Waiting List

Six months after Tommy's birth, a clinical evaluation revealed that Victoria's heart was functioning at 11% of its capacity, a figure close to the threshold of terminal failure. The doctors informed her that she had only a few months to live. “I asked the doctors how much time I had left and they told me I only had a couple of months. It was devastating. I could only think of Tommy. I swore I wouldn't leave him”, she recounted. He entered the urgent transplant waiting list. Two hearts appeared as potential donors, but new tests ruled out their use. Resignation gave way to episodes of failed hope: “Each time I was filled with hope, thinking that this was it, that they would save me. And then they told me that the operation could not go ahead. I didn't know if they would find a heart in time. I had lost all hope”. In April 2023, a compatible heart was found. The transplant surgery was performed at the Queen Elizabeth Hospital Birmingham. Thomas was able to return home in May, after seven months of continuous hospitalization. She recovered her physical function and resumed sports practice: "I had been hospitalized since Tommy's first birthday in October and now I was finally home with him. I couldn't believe it," she stated. The athlete returned to training netball four times a week and joined the British national transplant volleyball team. She plans to compete in the World Transplant Games in Germany. Victoria's son, Tommy, does not present the genetic mutation associated with Danon disease, as the woman said. Family studies confirmed that it is a sporadic case. "I am spending time as a mother with my son and I have returned to practicing the sport I love. I feel that I have been given a second chance in life and in being a mother. It is the best gift I could have asked for", concluded Thomas.