Donna Holmes is lucky to have reached the age of 33 as sixteen members of her family died young. It was only when she suspected her own children might be at risk that she discovered they’d been victims of sudden death syndrome
“Last August. I was diagnosed with Long QT Syndrome (LQTS). one of the causes of sudden death syndrome (SDS). Having LQTS means there’s a contamination of the messages travelling from my brain to my heart and, left untreated, it can cause sudden death at any time because of the disturbance to my heart’s rhythm. It’s what killed my mother Yvonne. She was only 21 and l was just three years old, her only child, although Mum had wanted a large family. Of course I can’t remember much about it but her death deeply affected my father.
MYSTERIOUS DEATHS
“Doctors couldn’t explain why my mother died but, because she’d had a blackout before, they put it down to epilepsy. Tragically, her brother had also lost his life a year earlier. And, like my mother’s, his death was sudden and unfathomable – he was only 16 and was swimming when he had a fatal blackout. These weren’t the first deaths, my maternal grandma also died unexpectedly, aged 30. As I grew up, more of my family, all under 40 and apparently in good health, died young. My cousin Anne-Marie, for example, was 17.
“The news of each death sent chills down my spine. By the time I was 20, I’d lost my mother, my uncle, my cousin and my grandmother and, unknown to me at the time, many more family members. I remember feeling angry and helpless. It seemed so unfair when most of my friends were surrounded by family. But, after the shock of each death wore off, I buried my head in the sand. It sounds strange but I think denial was my way of shutting out the idea of anything happening to me. I was young and healthy, not a candidate for heart failure or an epileptic fit. My father and I became closer as I grew up but my mother’s death was always an emotional barrier too painful to talk about
In the late 1980s, I fell in love with and married a lovely man called Weston. I told him how I’d lost my mother and turned to him for support when my grief became too much. There was nothing I couldn’t talk to him about. Our life together was so good that I didn’t want to think about getting ill, so I tried even harder to blank out what was happening in my family and ignore the possibility of it happening to me.
FACING UP TO REALITY
Then, a year after Weston and I married, I gave birth to Luke, now 13. Over the next few years, I had three more children, Daniel, Billy and Benjamin, now aged ten, eight and five. That’s when my attitude started to change. Becoming a mother forced me to confront my family’s health problems. After all, whatever this illness was, it had to be hereditary, as three generations of deaths in my family indicated. And there was no way I could let anything happen to my own children.
THE TRUTH AT LAST
“One day, my mother’s younger brother Neil came to see me. He was a detective, so if anyone could find out what was going on, it was him. One reason the doctors couldn’t identify the cause of the deaths is that, on examination, my relatives’ hearts seemed undamaged. However, Neil had done some research on the Internet and discovered that all those who’d suddenly died had LQTS. He begged me to get myself checked out as he was sure I could be next.
“When Weston came home from work, I told him everything Neil had said and the look on his face intensified my fears. He urged me to get help and told me he couldn’t stand the thought of losing me.
“When I visited my GP, he didn’t seem overly concerned but did an electrocardiogram (EGG) test to check my heart rate. When the results came back normal I was totally delighted but my relief was short lived. A few days later, I blacked out. I was dozing on the sofa after a hard day when the phone rang. As I got up to answer it, I collapsed.
“The last thing I remember is the room spinning and when I came round several minutes had passed. It took ten minutes for me to feel able to move – I was weak, shaken and scared I’d blackout again. Even worse, the children were in bed and Weston was out, so l had no one to look after me. But he rushed home when I phoned him and comforted me as I tossed and turned all night.
“I went back to my GP the next morning. This time I was really determined not to leave his surgery until I was taken seriously. I was referred to Broad Green Hospital in Liverpool and given another ECG test, this time while I was running on a treadmill. The results revealed an irregularity in my heartbeat. It proved that I, like all the generations before me in my family, suffered from LQTS and meant that I, too was a potential victim of sudden death syndrome.
“Obviously Weston and I were devastated but, in addition to the shock, I felt relief that my condition had been diagnosed. That same day I was put on beta-blockers to help keep my heartbeat regular. I have to take the tablets twice a day for the rest of my life but they are more than 95 per cent guaranteed to prevent premature death.
“As scared as I was for myself, my main concern was for my children, I couldn’t bear the thought that I had passed this potential death sentence on to them. The chances were that at least one of them would have inherited it.
“The same day I received my results, I got my children tested. We then faced an agonising six-week wait for the results. I couldn’t help feeling guilty. What if a fourth generation of my family didn’t live to see adulthood because of me? All four of my sons were given the all clear, I was so ecstatic. My family would be clear of LQTS in the future and the only person at risk was myself.
“Though the beta-blockers stabilise my heartbeat, I still experience side effects. As a mum with a full-time job as a hairdresser, I’ve always been on the go but I tire easily now and am exhausted by early evening. I often feel anxious about my condition and it does limit what I do. I used to swim all the time but I won’t go near a pool now. The combination of physical exertion and water could bring on a blackout and I can’t risk it.
LUCKY TO BE ALIVE
“Above all, though l feel lucky. All the family members I lost had died by the age of 36. If I hadn’t found out when I did, I might not be alive today
“As it is, I have everything to live for — a wonderful husband and four beautiful children who’ve been given the all-clear. I’m so happy that, in the end, I had the courage to seek medical help. The LOTS is under control and I have a long, bright future ahead of me.”
