Sudden Death Syndrome

February 22, 2012
Lucie Parker

Which is more likely, death as the result of a car crash, or dying whilst jogging on a Wii Fit games machine? For the majority, the answer may seem simple and the question perhaps a little ridiculous, yet for the parents of Tim Eves, a healthy 25-year-old man who died suddenly last year during an innocent workout, this question is far from absurd.

Athletes on the sports field, a young girl thrilled by her first kiss, a teenager collapsing onto his birthday cake, a girl on her morning jog, somebody’s son at the wheel waiting for the lights to change; all of these commonplace actions are linked by one collective factor that is ironically far from mundane, death by Sudden Adult Death Syndrome (SADS).

Known as the stealthy and silent killer, SADS is an umbrella term, which is applied after death, for around a dozen conditions that claim the lives of 12 people under 35 every week in the UK. Out of those affected, 90 per cent are male and the majority are under 35. These deaths have a special poignancy because there are few prior symptoms and the victims appear, like Tim Eves, to be in prime health. Dr Jonathan Goodfellow, Consultant Cardiologist at the Princess of Wales Hospital in Bridgend, states that “you cannot live with SADS, but you can live with an underlying problem that can eventually cause it.” These problems are usually due to an abnormality of the heart structure, such as the swelling of the ventricles in the heart, or electrical system of the heart, which in turn can lead to an abnormality in the heart rhythm. Changes to the heart’s rhythm can subsequently cause cardiac arrest and possibly death. Dr Goodfellow describes these conditions, which can be hereditary, as “very incapacitating, drawing attention to the potential risk of passing them onto your children”.

Sadly there are those who remain unaware of the fact that they may be suffering from an undiagnosed heart condition until it is too late. Oliver King, a passionate young athlete who went to school in Liverpool, died aged 12 after collapsing on the football field. His parents, Mark and Joanne King, subsequently established the Oliver King Foundation in his memory and campaigned to raise funds for a defibrillator to be kept in all schools and sports centres in the North West. As well as local fundraising, further national action has been taken to prevent the tragic repercussions of this illness. Cardiac Risk in the Young (CRY) was set up in 1995 to raise awareness of the conditions that can lead to SADS. Alison Cox, chief executive of CRY, set up a nationwide tour of free screenings for 2,500 young people to discover those who were “walking around with an undiagnosed and potentially fatal heart defect – literally a ticking time bomb”. Pixie Lott, Sir Steve Redgrave, and David Walliams have all since become patrons for this worthwhile cause.

There are a number of diseases that are known as “silent killers” because they gradually consume you without causing any serious symptoms in the early stages. Others known are types of diabetes, hypertension, obstructive sleep apnea and rectal and colon cancer. But these are conditions which remain silent because people are embarassed about seeing the doctor. Often though, the tests for such conditions are not intrusive.

SADS has also been linked to cot deaths in infancy, as they both cause deaths that share three features: unpredictability, spontaneity, and a dramatic nature. Unsurprisingly, the cruel nature of this condition has a profound impact upon those who have known and loved these victims. Society dictates that the natural process after death is acceptance and grievance, yet SADS is an illness without a proper explanation. An illness that unfairly goes against what we know as the sequence of life. The tragedy is that many suffer from great emotional stress during the shocking aftermath that the deaths of their loved ones create, attempting to overcome their grief yet constantly questioning the injustice of someone dying so young. They are expected to accept a notion that nobody can ever be prepared for, the unthinkable juxtaposition of age and fitness overcome by death. However, they lack the necessary detail and understanding to relieve their pain.

Yet whilst the prospect of enjoying life for someone diagnosed with SADS seems bleak, many people find hope. Raymond McKimm is a 46-year-old man who used to work as a psychologist with troubled children. He now owns a string of successful men’s clothing shops, constantly touring the country for new items and creative ideas. However unbeknown to the human eye, five years ago he was diagnosed with a terminal heart condition that caused the thickening of the muscle in his upper left ventricle.

An extremely fit and healthy man, whose lifestyle for years had included running 40 miles a week and swimming lengths along the bottom of the pool, found his normal life invaded by something so rare. The niche Raymond had created for himself and relied upon was no longer there. After bouts of breathlessness and tiredness, he became worn out by flights of stairs and plagued by pain and heaviness in his chest. “Collapsing on the floor of the hospital when I went to get checked out and then regaining consciousness to be told I’d had a heart attack seemed surreal,” says Raymond. “I felt confused and detached from reality. The only awareness I possessed was the presence of others around me without being able to hear their voices”. He’d had no previous indication of anything being seriously wrong, thus perceived his diagnosis to be simply ridiculous.

For Raymond, the absurdity continued when a phone call from the hospital told him it wasn’t a heart attack at all, and sent an ambulance for him to return immediately to hospital. “When I got there one doctor remarked that he’d never met anyone before with SADS. At this point I thought ‘neither had I’”. Little did Raymond know that his life was about to take a significant turn. Having been diagnosed with hypertrophic cardiomyopathy (thickening of the heart ventricle) and groping for comprehension, he spent a year in complete and utter denial. Countless counsellors, nurses and psychologists were unsuccessful in breaking down the defence he’d erected around himself to prevent this condition becoming reality.

Richard Wright once said, “men can starve from a lack of self-realisation as much as they can from a lack of bread”. It took 15 months for clarity to finally hit. A modest conversation with a nurse who was unassuming in nature, combined with the healing of time, was the catalyst that caused the emotional realisation in Raymond, which he so desperately needed. “I felt a sadness at everything I had to give up because of my health, and grieved for everything I knew I’d lost.”
This was the poignant turning point that stood out from this agonising period of distress, bringing him optimism and giving him the motivation to move forward with his life. “Once I began to acknowledge that the heart condition was there, it was fine to acknowledge the limitations. If you can live inside those limitations you can live a life worth living.” The strongest coping technique for Raymond is acceptance, which brings back into perspective that your life isn’t gone. “Listening to others around you and believing in yourself gives you all the strength you need.”

Physical acceptance comes hand-in-hand with emotional acceptance. On a day-to-day basis, the biggest difference for him isn’t that he’s lost his job or has to sleep in the afternoons. “Having to sleep propped up on five pillows so I can breathe properly, and dreaming of suffocating when I slip off them in my sleep is a huge and frightening lifestyle change.” Listening to your body and slowing down when it tells you to is the key to managing a SADS related condition. If diagnosed, there is no cure but it is containable. Treatment exists for some in the form of medication, an everyday action as ordinary to Raymond as drinking water is. The possibility of a heart transplant is non-existent for him due to age, but could be possible for somebody younger. So far, the only potential solution that has come to light is a treatment carried out in America, where doctors inject the affected heart muscle with alcohol to reduce swelling. Although effective, this carries big risks of the alcohol seeping into the heart and causing death.

One piece of advice he’d give? Talk to somebody. Acceptance is the hardest step because you have to admit that you have a problem in order to solve it. “You’ve got a choice. A simple choice. Take it easy or drop dead.” In hindsight, he would have given in a lot quicker when first diagnosed, yet the difficulty of his challenge has instilled in him the ability to have faith. “Don’t give up, as this determination opens up the possibility of doing something great with your life.”

With a mother who’d had four heart attacks, and a grandmother who’d died of a heart attack, it was perhaps unsurprising that Raymond had inherited heart problems too. The unfortunate downside to this, however, is that he could have passed on his condition to his children, one of whom it has been detected has a mild thickening in his heart. “Not only is it dreadful that I have to live with this, to have potentially given it to somebody else is devastating.”

To be in the presence of Raymond’s quiet confidence and gentle wisdom just shows you the tumultuous journey he’s experienced and demonstrates the incredible nature of his acceptance and strength. Most sufferers of the condition are supported by loved ones and charities such as CRY, who organise fundraising activities. Raymond says his inspiration has come from his friend, Andy, who “teaches me to be flexible; he does things in a measured way so you can achieve only what you are capable of.” His quality of life has been vastly changed as a result of their friendship, and it shows the prospect of death changes your priorities and attitude.
“If you let it, life will take a different course and you can do something amazing. I’m living a life I never could have imagined five years ago.” This recognition is liberating, despite being trapped with this heart condition, putting a boundary on life makes you aware of its fragility. As Leonardo Da Vinci once said, ‘life well spent brings happy death’. Not only is Raymond, and those suffering from the condition, an inspiration but he is a symbol of hope. The condition SADS represents a lot more about the human condition than our fear of dying – and furthermore it’s a desire for optimism. It’s about predictability. Perhaps the greatest fear of all is not knowing what’s going to happen, and being caught off guard. But as Raymond shows, there’s not a lot we can do about that, whether you’ve got SADS or not.

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