SUDDEN CARDIAC DEATH – MAGAZINE LAYOUT

SILENT HEARTBREAKER

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The Silent Heartbreaker

“It was the week before Christmas when it happened,” said Sue Williams. “David arrived home early from kick-boxing and explained his heart was racing. It was the first mention of anything. I always told him not to work so hard but he never listened. Why should he? It was good for him. He always thought I was fussing anyway and he did that night when I took his pulse and sent him to bed. I just thought his heart was just taking a while to calm down and he should rest – that was all. It was the only symptom. If I could take back that decision I would. We all went to bed and found him the next morning. He’d just died in his sleep.”

Sue sits on David’s bed. His sky-blue bedroom has remained unchanged for three years. You can still almost smell the faint aroma of a young man’s aftershave; his sports medals and trophies leave almost no room for dust on the shelves. Action figurines stand frozen on his television; his treadmill sits in a shadowy corner.

“Its very raw still,” Sue said swallowing hard. “When it happened I was in a daze for weeks. I just cried all the time. I think you might get better at hiding it and controlling your emotions. You have to. But it’s always there, at the back of your mind. It’s particularly difficult this year for me because my daughter’s away as well.”

In contrast to David’s busy room with its sports stickers and figurines the rest of the bungalow is bare, even in the height of the festive season. The walls with their low ceilings are scattered with a few well-chosen family photographs and a ‘For Sale’ sign stands alone in the front garden. “This condition not only breaks hearts it also breaks apart families. After David died my husband’s diabetes worsened and he died last year. My daughter has now moved away and I’m all alone in this house. I love it so much and as difficult as it’s going to be to sell it, after three years I think I’m ready for the next stage of my life.”

David’s cause of death was never discovered. Doctors believe he died from Sudden Cardiac Death, a fatal heart attack due to a genetic, undetected heart defect.

According to ‘Cardiac Risk in the Young’, the single UK charity for parents and children affected by Sudden Cardiac Death, there are 12 children who die every week from this condition at the very least, all preventable with simple heart scans.

“I know four people who died in my tennis playing days,” said Alison Cox. She founded the charity C-R-Y in 1992 after her 18-year-old son was found to have an abnormality in his heart and never played tennis again. “People tell me everyday how rare it is yet nearly everyone knows someone who has been effected by these types of deaths. We are the only organisation that deals exclusively with cardiac arrests in young people.”

The charity hosts six bereavement days a year and strives to offer support and advice to both parents and children who have been touched by the condition. “We’re pushing for more and more screening to be done,” Alison said. “The reality is that the NHS currently faces a funding crisis. Although this is not a government priority it is ours. We talk to affected families daily and our job is to try to mitigate their distress at this terrible time. And it can all be prevented with a simple painless screening process.”

Unlike in the UK, cardiac screening in Italy is available every year to any young person who takes part in competitive sport. The scan is called an Electrocardiogram and is similar to an ultrasound for pregnant women. In Italy it is available on the public health service and can be vital for picking up abnormalities in the heart before any fatalities occur.

“In Italy they have reduced Sudden Cardiac Death in young people by 90%,” said Dr Graham Stuart, Consultant Cardiologist at Bristol Congenital Cardiac Unit. “They have been doing it for 25 years now which is a fantastic achievement. This simply shows deaths can be reduced using screening techniques and organisations such as C-R-Y that push for national screening should continue to pressure the government. Kids should be screened throughout their schooling and also adults who take up exercise late in life.”

The charity C-R-Y has many famous faces on board to help raise awareness of Sudden Cardiac Death. These include Little Britain star David Walliams, Former England Rugby Union Coach Clive Woodward and Former England Cricketer Sir Ian Botham. We caught up with Ian while on holiday with his family to talk about his association with the charity and its importance.

“I got involved with CRY after an old school friend asked me to become a Patron,” he said. “She ran a leisure centre in my home town and a seven year old child had died in the children’s pool. She was found to have a genetic cardiac condition. I now want all kids to have heart tests just as they do annually in Italy. Development of the Sports Cardiology Unit is crucial to underpin CRY’s very ambitious screening programme and save young lives. We must stop these terrible tragedies. It is something that must be addressed and has been swept under the carpet for too long.”

So what can be done if scans detect anything ominous? The most common treatment is prevention if you are found to be at risk. Doctors will advise you to avoid exercise and competitive sport. If you’re heart is found to have an abnormal rhythm an operation is also available to insert a small metal box into your chest to shock your heart back into a normal rhythm. It’s called an implantable deflibulator.

However, not all medical professionals favour screening at this moment in the UK. Jan Till Consultant Paediatric Electrophysiology from the Royal Brompton Hospital thinks more needs to be done to understand the causes of this genetic condition rather than the cure.

“For many years they were poorly understood and still now despite huge progress we do not understand everything about these conditions,” she said. “Although it is best for all young people to see a doctor if they feel palpitations, they should be particularly aware if they experience these or feel faint during exercise.  Anyone who has lost a relative suddenly and unexpectedly below the age of 45 should also ask to be properly screened at a specialist clinic.”

Similarly, Dr Rob Martin, Consultant in Paediatric Cardiology at the Bistol Royal Hospital for Children, has been involved in many legal cases involving Sudden Cardiac Death. He agrees that finding treatment is not as important as understanding the condition itself. “Raising awareness about sudden cardiac death is difficult as the chance of a child dying suddenly is very small and the beneficial effects of exercise probably outweigh this risk,” he said. “With the rise in childhood obesity we do not want to discourage children from taking regular exercise. We need to understand this better. DNA analysis is costly and the ability to look for these conditions is relatively new. I dealt with a legal case regarding a child that drowned in a pool and the inquest was looking for issues with supervision rather than looking for a cardiac cause for the death. Correct diagnosis is key and it has not been practice to undertake molecular autopsies so far in this country.”

Professor Peter Weissberg Medical director British Heart Foundation agrees and stressed that scanning for symptoms when knowledge of the condition is lacking could do more harm than good. “To an extent there is not much point in raising awareness if you can’t do anything about it,” he said. “Whenever there is a young sudden death the cornier will alert the family to a possible genetic condition and get the whole family screened. But it is so rare, there is no point in copying Italy and screening the whole younger population, we still don’t know exactly what we are looking for. There is a strong possibility of picking up false positives and breaking young kids sporting dreams unnecessarily. Of course it’s tragic and more needs to be done, but we could create a culture scared of something so rare.”

Back with Sue, she took me to the local park where she had planted a tree in memory of her son. Unlike her home the braches were scattered with Christmas decorations and cards and as I sat and listened to Sue’s tragic story I had little idea there was so much debate surrounding young sudden deaths such as David’s. “I was so proud of him,” she said adjusting a dangling Santa on one branch. I was proud of his GCSE’s, I was proud every time I went out to watch him behind the boat doing his wakeboarding. I was just so proud of him because he was fearless. But that’s what’s so hard with these types of deaths. You don’t have the chance to tell them. I think he knows I hope so. Things are not being done quickly enough. It’s happening to normal families, right under our noses.”