In the last 13 years Michelle Griffiths has gone to the funeral of two of her sisters, her two brothers and her niece.  Now she's left wondering which of her family could be next.

I am an active, happily married, healthy mother of two. I work full-time as a sales clerk, love my aerobics classes and can’t remember the last time I took a day oft sick. Yet l've just undergone a painful two-hour operation to have a defibrillator fitted to my perfectly healthy heart. This will send an electric shock to my heart if it stops beating and so save my life. ‘I’ve taken loads of tests that show my heart is normal and there’s no risk of it failing but I have to take the precaution because I’ve lost five members of my family to sudden death syndrome. My two brothers and two of my four sisters, as well as my young niece, didn’t live beyond the age of 22.

“The first death was my younger sister Patricia in 1988.  She had never had any health problems and seemed a fit 22-year-old.  She still lived with our parents close by in our home town of Hoghton, near Preston, with her baby daughter Vicky, who was approaching her first birthday. Around this time she started having fainting spells. The doctor diagnosed her with epilepsy and put her on medication.  We didn’t think epilepsy was life-threatening and just carried on as normal. ‘One night, a few weeks after Vicky’s birthday, there was a knock at my door. It was one of my mum’s neighbours.  She seemed uneasy  “I don’t know how to tell you this,” she said as her eyes welled up with tears. “Patricia’s dead.”  I couldn’t believe it. I was so distraught I couldn’t speak. My first reaction was to try and find my husband John who was out.  I desperately wanted to rush over to my mum’s but my two young sons were in bed and I couldn’t leave them alone.

“The next day I went to my parents, where the whole family were gathered in shock.  Patricia had died in her room, the official cause of death an epileptic fit.  It hit us very badly.  Mum and Dad were left to raise Vicky who didn’t have a clue she’d lost her mother.  It was difficult for me as Patricia and I used to spend every Friday evening together. For weeks after her death I’d expect her to come round on a Friday and each time I remembered why she wasn't coming, it was like finding out she was dead for the first time. ‘After the funeral we tried to get on with life as well as we could. It was 18 months since Patricia’s death and the family had finally got back to normal when Carol, my youngest sister who was 18, also started fainting. The alarm bells went oft and she went in and out of hospital for tests but nothing showed up. A few months after her check-up she collapsed during a trip to Blackpool and was pronounced dead on arrival at the hospital. We were devastated. It was impossible to take in that we’d lost two loved ones so close together with no warning or reason. ‘The coroner reported that she’d died from acute focal myocarditis - a type of heart virus. Why hadn’t the doctors spotted anything during her check-ups? At the time we had no reason to make any connection between the two deaths as they were from different causes. We thought it was just a horrible coincidence.

"Three months later my brother Phillip called and told me to come to our parents’ as he had something to tell me.  I immediately knew but didn’t want to believe that someone else had died.

“It was my other brother Stephen. He was 20 and had been out swimming with his friends and had drowned.  At his funeral I felt miles away.  I couldn't accept another of my siblings had died, all I could think was, “Why us?” The family didn’t like talking about the deaths and each one was brushed under the carpet, which was agonising for me, as I had to suffer in silence.

“I lived in fear of the phone ringing and someone telling me another family member was gone, yet I still couldn’t believe it when two years later in 1992, Phillip died at the age of 18. By now I thought we must be cursed

“Organising funerals seemed sickeningly routine. His death had been as sudden as the others. He hadn’t been ill, yet had died of cardiac arrhythmia, a problem with the heart’s rhythm. The four deaths had to be more than a coincidence.

“At the inquest the pathologist suggested my sister Vanessa and I go for tests to make sure that our hearts were all right.  We still didn’t know if there was a genetic link, but we did know that the deaths had occurred in the younger members of the family.

“Both our tests were all clear. I felt reassured that at 26 I had passed the age of 22 because my brothers and sisters had all died at or before that age. Though I felt relieved my remaining sisters, Dawn and Vanessa, and I preferred not to talk about the fact that we’d lost siblings and we could die too. But avoiding the subject made it harder to get on with normal life and other people started to treat us differently too. Friends would cross the road rather than have to talk to us about all the deaths in the family.

“Eight years passed and my boys and Vicky grew up. They were all fit and healthy and it seemed that, like me, they were going to escape our family curse, but when Vicky was 13, she started feeling dizzy and fainting. It was as if history was repeating itself.

“She was taken to the hospital and they checked her heart but said it was fine. It was agonising watching the doctors do nothing about it - like waiting for a bomb to go off.

“‘Vicky collapsed in Mum’s arms at their home. The cause of death was cardiac arrhythmia — the same as Phillip. We were heartbroken, both for Vicky and the grief at everyone we’d lost.  I felt helpless and petrified for my sons and demanded some answers. I went to see the doctors and they agreed there must be a link but didn’t know what it was.

“A few days after Vicky’s death, Mum had received a booklet in the post from a group called CRY, Cardiac Risk in the Young.  She was too upset to look at it but I had to read it straight away

“Once I started reading I couldn’t stop it mentioned a syndrome called Long QT an abnormality of the heart’s electrical system which causes the heart to beat very fast and results in a sudden loss of consciousness.  When the heart doesn’t beat property it means oxygen isn’t being pumped around the body that explained the fainting spells Carol, Patricia and Vicky had suffered.  It’s almost impossible to detect through normal checks but there was no doubt in my mind that my family were victims of Long QT which was aso known as “sudden death syndrome”

“I took my findings to my GP and he agreed that I may be right and referred me to a specialist to carry out checks on me and my sons. The normal ECG showed nothing was wrong with any of us.  The next thing was a treadmill test. This was to see if the heart went back to normal after exercise.  Again I was all clear and so was my eldest son Lee. However, the doctors were not too sure about Danny.  The ECG following the exercise on the treadmill showed that his heartbeats were not regular and he’s been diagnosed with borderline QT until further tests can be carried out.

“At first I was so scared of losing Danny I’d check him over and over again and would stand outside his bedroom door to make sure he was still breathing.  But since he’s been on beta-blockers to control his heartbeat I’ve felt calmer.  The fact Danny might have the Long QT almost guarantees I am at risk as it is an inherited syndrome.  My doctor advised me to have a defibrillator fitted and I did last month.  Although there are no signs anything is wrong with my heart, I didn’t feel as if I had a choice. ‘My operation took two hours and I have to give up driving for six months and all contact sports - in case the sudden burst of exercise triggers a problem.  The scariest thing of all will be the six-month check-ups.  Here the doctors will be able to tell if the defibrillator has been used - and I will know whether I would have been dead without it.’