The devastating truth about young sudden cardiac death
No-one is more passionate about campaigning for screenings than Heartfelt. The support and fund-raising group was created through friendships that have grown over 10 years because of the shared sad experience of young sudden cardiac death, and the passion to support the work of Cardiac Risk in the Young (CRY) in helping to save lives. With one emotive cause in common, members discuss their devastating losses.
RUTH LOWE’S STORY
Ruth, 60, of Woodplumpton, near Preston, lost her son, Andrew Parr, during Easter 2004, aged 21.
She says: “My husband and I were staying in the Cotswolds when we received the news that Andrew had collapsed and died suddenly while out with his friends.
“It is impossible to put into words the feelings I felt on receiving the news.
“I remember screaming and then went into automatic pilot – I had to get home. All I wanted to do was to go to Andrew and then maybe I would believe what had happened.
“I felt bewildered and confused.
“It was confirmed a few days later that Andrew had suffered a cardiac arrest on the night he died but had also suffered two heart attacks during the weeks before.
“The reason for his heart attacks was never ascertained. In every way he was a healthy young adult.
“In those early days the support I received from CRY, both clinically and emotionally, was very important and helped me to make some sense of what had happened to Andrew.
“Talking to someone who had suffered a similar tragedy was something I benefitted from.
“I have since undertaken two years counselling training with CRY to become one of their bereavement supporters.
“In a lot of cases of sudden death in an apparently fit and healthy young person no cause can be ascertained and this is very difficult to deal with.
“There are so many unanswered questions and you can feel very alone in your grief.
“To meet with others who understand exactly how you feel is so important. Sometimes words aren’t even needed – we know how each other are feeling because we have suffered the same loss.”
ANN COLES’ STORY
ANDREW Coles was working in Israel when he suddenly collapsed in front of his friends in 1997, at the age of 21.
His mum, Ann, 62, of Leyland, says: “Andrew was a fit and healthy 21 year old who was living and working on a kibbutz (communal settlement) in Israel.
“It was on his second trip that he collapsed and died in front of his friends.
“When we were informed of his death, we thought at first he must have had an accident but when we had the full facts we just could not believe it.
“How could someone so young and fit just drop dead?
“At the inquest, the coroner advised us that our son had a heart condition that had never been previously identified and that it could be genetic and to have our two daughters checked out as a precaution.
“I had to beg our family GP to give our daughters an ECG (electrocardiogram) even though I passed on the coroner’s advice.
“We were devastated. Andrew never showed any signs of illness and yet his heart had just stopped.
“A sudden young death rips a family apart. Every member deals with it differently and not always together.
“The pain is still strong even today.
“I then became aware of other young deaths reported in the local paper and realised they died in the same way as our son.
“I was told about CRY and started to read everything I could about what it stood for and its aims and within months had started fund-raising and trying to raise awareness.
“To know that we were not the only people who this happened to did not make it any easier - in fact the opposite as you would never wish another family to have to go through the pain and loss of losing their child.
“I met Ruth Lowe in 2005 after reading her story and through fund-raising and screenings, we have come together with other families all in the same position and have formed the group Heartfelt.
“We meet up for coffee and plan our events and share our friendship and support which is very valuable as we all know what the others are feeling.
“We know we can’t bring our boys back but we are passionate about raising awareness and providing free screenings in Preston.
“A simple ECG is a preventative measure which really does save lives.
“I would urge everyone between 14 and 35 to have a screening if they can.
“If anyone who reads this would like to join Heartfelt, we would be very happy to see you.”
SHEILA WIGGINS’ STORY
SHEILA Wiggins’ son Steve died in April 2005 from undetected heart problems at the age of 30.
He had been working in America for Crystal Holidays (Thompsons) as the area manager for Colorado and Western America during the winter ski season.
Sheila, 71, of Bamber Bridge, Preston, says: “My beloved treasured son, Stevie fell asleep suddenly from undetected heart problems.
“His path to a job he loved started with his dream to travel.
“Having played rugby union from age 10 he aimed to visit and play rugby in Australia.
“This he did, being away for two years working his way around Australia and New Zealand.
“He also travelled around Europe and worked in Canada too.
“He made a raft of friends all over the world but never lost touch with his lifelong friends here.
“As a son and much loved brother, Stevie is irreplaceable and his loss is immeasurable.
“For me, it is as if it all happened just yesterday.
“The feeling of devastation of losing Stevie never goes away.
“He loved his life, we loved him.
“I am passionate in trying to raise awareness through CRY.
“No one should lose their child through undetected heart problems if it can be avoided.
“We are losing far too many young people this way.
“Screenings can help find any problems which can then be dealt with.
“It is essential and takes very little time.”
DOT QUINNEY’S STORY
Dot Quinney was shocked when she couldn’t wake up her 26-year-old son David on a cold January morning.
He had been fit and healthy and was excited about his engagement to his fiancee.
But, he too, suffered an unexplained cardiac death.
Dot, of Poulton, says: “Our son David died suddenly in January 2005 because of an undiagnosed heart condition.
“He was just 26 years old, engaged to be married, keen on every sport you could think of and to all appearances a fit young man.
“No one can ever prepare you for losing a child.
“It is totally devastating for all the family and every parent’s worst nightmare .
“We found out about CRY via a friend. We had no idea that so many families were affected and so many young people were losing their lives because of undiagnosed heart conditions .
“Our aim, and that of the Heartfelt group, is to raise funds to provide heart screening for all young people in our area and hopefully prevent other families suffering the loss of a child.”
JULIE SMITH’S STORY
JULIE Smith has a more positive story to tell as it was thanks to CRY’s heart screening that her son, Christopher’s life was saved.
The ECG picked up Wolff Parkinson White Syndrome and Christopher had life-saving surgery.
Julie, 55, of Penwortham, explains: “Christopher was training at Preston Swimming Club when he suddenly stopped and told me his heart was racing. “You could actually see his heart throbbing through his chest and it seemed abnormally fast.
“It was horrible and very frightening.
“Christopher attended the heart screening at Myerscough College a few days later and an ECG revealed there was a problem.
“He was sent to a top cardiologist in London and it was discovered he had Wolff Parkinson White Syndrome. This means there is an extra electrical path to his heart.
“The specialist told us this condition meant he could have dropped dead at any time.
“After his diagnosis, Christopher began having heart episodes several times a week, even when he was not taking part in any activities.
“He underwent a procedure called catheter ablation at King’s College Hospital in London.
“This involved doctors mapping the electrical pathway to his heart through a vein in his groin with electric probes and then “burning” it away.
“Since then, Christopher has not suffered any heart episodes.
“By the grace of God I have a fit and healthy son.
“If it had not been for the screening, my son could be another death statistic.
“It is frightening.
“I know how bad I felt when Christopher was diagnosed with a condition I didn’t even know about.
“It is scary to think how we could have lost him. To go through losing your own child is beyond imagining.
“That is why I am passionate about screenings.
“It is a non-invasive and simple procedure and can save lives.
“Why the Government doesn’t back it is beyond me.”
Every week in the UK there are at least 12 apparently fit and healthy young people who die suddenly from YSCD (Young Sudden Cardiac Death)
CRY aims to reduce the frequency of young sudden cardiac death by:
Raising Awareness of the conditions that can cause a young sudden cardiac death.
Offering Cardiac screening for 14 to 35 year olds.
CRY screened 23,000 young people in 2015
One in 300 people will have a potentially serious condition which will require on-going lifestyle modification, treatment or surgery.
All screenings are advertised on www.c-r-y.org.uk and appointments can be booked by visiting the website www.testmyheart.org
Heartfelt, is a local group, supporting the work of CRY. It plans fund-raising activities, such as quiz nights, afternoon teas, bucket collections, curry nights, a ceilidh and most recently a Firewalk.
As a result, it has funded three days of screenings over the last 12 months screening approximately 100 per day. More screening days are planned for March next year.
Anyone who wishes to meet with Heartfelt or organise future fund-raising activities can find the group on Facebook - Heartfelt