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Sudden cardiac death: Kent families raise awareness of underlying heart conditions that claim young lives

By: Lydia Chantler-Hicks

Published: 06:00, 23 January 2021

Updated: 09:54, 23 January 2021

Few can comprehend the colossal trauma of losing an apparently young, fit and healthy loved one without warning.

But tragically, this is the nightmare bolt from the blue that strikes families every week, when a young person dies as a result of a hidden heart condition.

Parents of young people from Kent who have tragically died due to underlying heart conditions are raising awareness of the issue

Four people from Kent aged in their 20s are among those who have suffered sudden cardiac deaths in recent years, due to underlying heart problems they didn't know they had.

Astonishingly, at least 12 apparently fit people aged 35 or below die suddenly every week in the UK, from a previously undiagnosed heart condition. Some experts believe the figure could be far higher, as such deaths are often hard to diagnose, and wrongly put down to other causes.

We spoke to some of the families who have tragically lost loved ones in this way, and who are now raising awareness of devastating heart conditions...

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'He was probably the healthiest person I know'

Rhys Coleman was just 22 when he collapsed and died at his flat in Canterbury.

Rhys Coleman, who died of Sudden Arrhythmic Death Syndrome (SADS) aged 22. Picture: Nikki Burrows

His devastated family initially presumed he had suffered a fall or an accident.

“Our worlds just crashed when Rhys died," said his mum, Nikki Burrows. "It was absolutely awful.

“He had no signs of illness whatsoever, and was never ill as a child. In fact, he was probably the healthiest person I know.”

The "adventurous and friendly" former Archbishop's pupil loved to travel, and had been "full of dreams".

Active and exceptionally hard-working, Rhys was employed at Asda in Sturry Road, but also worked at a car wash on his days off and still did the paper round he had taken on at 13.

Rhys was a passionate Harry Potter fan. Picture: Nikki Burrows

His prized possessions were his huge collection of Harry Potter costumes, wands, and collectables.

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"He just lived and breathed Harry Potter from when he was little," said his mum. "I think he was waiting for his letter from Hogwarts."

When his family moved from Canterbury to Aylesham, Rhys decided to stay on in the city, and moved into a flat in London Road by himself.

But tragically, in November 2015, he was alone at his flat when he collapsed without warning and died.

"His death was so fast and broke our hearts," said his mum.

Rhys' mum, Nikki Burrows. Picture: Nikki Burrows

"He was so young and so full of dreams. He was such a lovely lad, happy-go-lucky and full of life, and I think we were lucky to have him for 22 years."

Rhys' family learned he died from sudden arrhythmic death syndrome (SADS); an electrical fault in his heart had developed in the womb and could have killed him at any time.

They have since received support from Cardiac Risk in the Young (CRY), and have undergone testing to make sure no inherited heart conditions run in the family.

Nikki now hopes to help raise awareness of underlying heart conditions, and to encourage people to take advantage of heart screenings that are run by CRY.

"It's so important," she said. "A lot of people only go and get it done once they've lost somebody, because they don't know about it beforehand.

"Rhys had never had any heart problems, so he'd never had any tests done.

"But more people should know about it, because this can happen to anybody.

"It's silent, it's there, and nobody knows they've got it unless they have the screening done.

"If Rhys had had it done, there might have been a different outcome."

Fiona Tucker, who died in Canterbury in 2018, pictured on her graduation day

'Anything to ensure other families won't face what we've faced'

Happy and devoted mum Fiona Tucker went to sleep one night and never woke up.

A photo taken on holiday in Spain about a fortnight before her death shows the 29-year-old primary school teacher with her son Cassius, and partner Abraham - a beautiful, thriving young family.

"She looks so well," said her mum, Janice Robinson. "They were such an adorable family."

One night in August 2018, Fiona went up to bed at their home in Canterbury while Abraham watched television downstairs.

Fiona with her partner Abraham and son Cassius, pictured on holiday about two weeks before her death

When he later joined her, he found her lifeless. Paramedics were called, but were sadly unable to revive her.

Tragically, Fiona's death left Cassius, then six, without a mother.

“It hit us like a bomb exploding and has changed our lives forever,” said her mum.

“I kept saying to myself, ‘how could it happen’ because she was so active and healthy?”

Fiona's devastated family later learned she had died from an undiagnosed heart condition.

Janice Robinson, with her daughter Fiona. Picture: Janice Robinson

“When I tell people that up to 15 young people a week die like Fiona, they can’t believe it,” said Janice.

“That’s why it is so important to get the message out, to let people know this can happen so suddenly.

“The charity Cardiac Risk in the Young (CRY), who have been amazing to us, described it to me as like a light switch being turned off.”

Fiona's family are also anxious to raise awareness of devastating heart conditions.

"Anything to try to ensure that other families won't have to face what we've faced," said Janice.

Teacher and mum Fiona Tucker, who died from an undiagnosed heart condition

"Fiona was a busy, working, wonderful mum. A lovely, straightforward, honest person.

"There was nothing wrong. She was WhatsApping me photos of her son's shoes and trainers for going back to school, the evening she died."

Janice says Cassius, now eight, still misses his mum and that the reverberations of Fiona's death "will go on forever".

"She'd be so proud of him," she said.

“We take a crumb of comfort in that she did not suffer in any way, but we wouldn’t want anyone else to go through it.

“I still miss her every day."

Felix Lewis, pictured with his mum Diana just a few months before his death in 2019. Picture: Diana Lewis

'It was totally and utterly unexpected'

"Kind and gentle" Felix Lewis died after his heart stopped while on holiday with his family.

The 20-year-old Manchester University student was hugely popular and well-loved in his home town of Whitstable, where he had once worked at his aunt and uncle's clothing shop, Ruskin.

In August 2019, he and his family were on a "perfect" getaway in Croatia.

After the "happiest couple of days" they spent the morning paddleboarding, before heading to the beach in Pisak after lunch.

Felix was a fashion student at the University of Manchester

But shortly after diving into the sea, Felix was spotted unresponsive in the water and was pulled out by his mum and dad.

Beach-goers helped with resuscitation efforts before the paramedics arrived - but 45 minutes later, his parents were told he could not be saved.

A post-mortem later established Felix had suffered a cardiac arrest due to an abnormal heart rhythm.

Felix's mum, Diana, said: "He showed no symptoms, so it was totally and utterly unexpected.

"Felix was this incredibly healthy, vital, beautiful young man, who just suddenly just died, in our view for no reason at all.

Felix Lewis died while on holiday in Croatia

"It's not like he had cancer or something we knew about.

"It was just a ticking time bomb, basically, that we knew nothing about."

Diana says the tragic case shows heart conditions "can happen to anyone".

She is now keen to do "anything that can raise awareness of the condition, and give an insight into why it might happen".

Speaking shortly after Felix's death, his mum, dad Ben, and brother Théo, paid tribute to him as "a kind, loving, gentle soul who had time for everyone".

“He was our beautiful boy,” they said.

“He was full of life, surrounded by so many friends and a girlfriend he loved.

“He has been taken from us far too early and we mourn the life he should have lived. There is a Felix-sized hole in our family which will never mend. We love you and miss you.”

Dominic Hamlyn died after suffering a cardiac arrest at his brother's 21st birthday celebrations. Picture: LinkedIn

'Our only solace is to make sure others do not die needlessly'

Super-fit Dominic Hamlyn, 24, was doing lengths underwater during a family birthday party when he suffered a sudden cardiac arrest.

The “extraordinary” young Cambridge graduate and former King's School pupil had been celebrating his brother's 21st, at the family's home in Crundale, when the tragedy struck.

He had delivered an “irreverent and entertaining” speech about his little brother, before going for a swim with friends, as he often had.

But when Dominic - a skilled athlete who excelled in rugby, rowing and cricket - became motionless in the water, frantic friends pulled him from the pool.

Dominic, far right, pictured with his parents and brothers. (Picture: Benedict Hamlyn / Instagram)

Despite determined CPR from his father - leading neurosurgeon Peter Hamlyn - the rapid arrival of paramedics, and efforts by specialist doctors who worked on him throughout day, Dominic died in hospital 15 hours later.

An inquest later found he had suffered a cardiac arrest due to a previously unsuspected heart condition, which medical experts agreed was unconnected with the swimming and could have happened at any time.

“Blessed in our lives, our luck ran out that night," said his father.

Mr Hamlyn, a sports injury expert, has previously written in detail about how there needs to be more awareness of cardiac risk in young people - and has called for more education within medical services on the potential life-saving opportunities.

“Such cardiac arrests in young people are not rare, and tragically they are usually lethal,” he wrote.

“However, outside a small group of specialists there is widespread ignorance of the condition.

“Why does all this matter? It matters because the lack of awareness and medical imprecision is killing young people every day in Britain.

“As a family, our only solace is to try to make sure others do not die needlessly, and the only hope for potential victims is to pick up the underlying condition before it strikes.”

Mr Hamlyn believes the statistic that "at least 12 young people die of cardiac arrest each week in the UK" is likely to be a “gross underestimate”.

“As a result, victims’ families will continue to go unscreened and readily treatable warning signs missed,” he continued.

Dominic's father Peter Hamlyn. Picture: Schoen Clinic

“Families such as ours, who have lost a loved one to a young cardiac death, must undergo specialist screening to see if they have one of the inherited risk factors.

“An apparent drowning or road accident may mask the cardiac arrest that is the true cause of death.

“More specifically, pathologists need to look for cardiac abnormalities when investigating young deaths. Crucial tests that can turn up otherwise unsuspected cardiac problems are not part of a routine inquest but must be carried out.

“Likewise, readily treatable warning signs must not be missed. Any young, fit person experiencing faints or blackouts should be screened by a specialist unit.”

Mr Hamlyn wants his son’s legacy to not be that of a family immersed in grief, but one that brings awareness and change.

“The loss for us is profound and life-changing,” he added. “No words can describe the scope and scale of it.

“Along with my wife and Dominic’s two brothers, we each feel a part of us died with him that day.

“It is my fervent hope that lives will be saved in his name. It is our only comfort now.”

Dr Steven Cox, CEO of charity Cardiac Risk in the Young (CRY). Picture: CRY

More about sudden cardiac deaths and the charities working to help prevent them

Charity Cardiac Risk in the Young (CRY) screens thousands of 14- to 35-year-olds every year in an effort to pick up hidden heart conditions before it is too late.

But since the coronavirus pandemic began, it has had to cancel more than 25,000 such appointments, including more than 600 in Kent.

The charity believes that in the county alone, this will result in several asymptomatic young people not receiving a diagnosis of a potentially life-threating condition - and thus not receiving treatment, advice or surgery that would reduce their risk of a cardiac arrest.

CRY’s chief executive, Dr Steven Cox, said: "Worryingly, our waiting list of young people who have registered an interest in screening now stands at over 40,000.

“Every subsequent month that screening events are cancelled or postponed will result in the loss of a further 3,000 appointments [across the country], and another 10 people being left to live with an undiagnosed cardiac condition that could cause them to have a cardiac arrest and sudden death.

“We cannot allow these young people to become part of the devastating '12-a-week' statistic."

While testing cannot currently go ahead, those aged 14 to 35 are urged to take advantage of such appointments when they do.

And in the meantime, to be aware of heart conditions and the dangers they can pose.

“We are doing all we can to resume CRY’s screening programme safely, rebooking events and working through our ‘backlog'," said Dr Cox. "And to ensure that awareness of the importance of cardiac screening in young people does not diminish."

The causes

Sudden cardiac death in young people is usually caused by heart disease such as cardiomyopathies - abnormalities of the heart muscle - or congenital heart disease.

But in about one in five sudden cardiac deaths in those aged under 35, no cause can be found, even when the person's heart is examined after their death by a cardiac pathologist.

This is known as sudden arrhythmic death syndrome (SADS). It is thought there are about 600 such cases each year in the UK.

SADS is usually caused by syndromes that bring about arrhythmia - disturbances in the heart's rhythm - even though the person has no structural heart disease.

Tragically, in some cases there are no warning signs before someone dies of an underlying heart condition, which is why screening is so vitally important.

But there are some tell-tale signs to look out for.

The warning signs

Charity Sudden Arrhythmic Death Syndrome has worked with eminent cardiologists to put together a list of symptoms, which it distributes widely to GPs and schools.

Warning signs of heart conditions (44056086)

Sadly, cardiac risk in young people remains widely misunderstood, even by clinicians.

Tragic recent cases have seen young people visit their GPs after experiencing symptoms of heart conditions, only to be turned away, and later die.

CRY says current UK health policies that are in place to prevent young sudden cardiac deaths are "contradictory", while young cardiac deaths are "significantly under-reported".

It urges MPs to sign its pledge, calling for a National Strategy for the Prevention of Young Sudden Cardiac Death - which would ensure consistent policies and guidelines, and "correctly acknowledge the incidence and impact of these deaths".

For information about CRY, visit the charity's website.

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