North East families are campaigning for a national screening programme to cut the number of deaths put down to sudden death syndrome. Mitya Underwood meets them.
Ann Wilson will never forget the tragic moment she found her son dead. On January 2, 2004, the mum-of-two witnessed a sight that no parent should ever have to see.
Walking into her 24-year-old son James’s bedroom to wake him up, she found his lifeless body face down in his bed.
“My mind just went,” she recalls. “You can’t take something like that in.
“When I walked in I saw him face down and thought, ‘He won’t be able to breathe like that’. I shook him but he didn’t respond.
“I thought he might be in a deep sleep. He was just lying still. His shoulder felt warm. I shouted to my husband James to come and help.
He felt his pulse and moved him. Jimmy was blue down one side of his body.”
Sadly it is estimated around eight young people die unexpectedly each week in the UK. Sudden Death Syndrome (SDS) is an umbrella term used for the many different causes of cardiac arrest in young people.
These can include thickening or abnormal structure of the heart muscle or irregularities in the electrical impulses, which can upset the natural rhythm of the heart.
The Cardiac Risk in the Young (CRY) charity is currently campaigning to introduce screening for young people as it is believed more than two thirds of sudden deaths in the young are linked to hereditary conditions which could be picked up on an electrocardiogram (ECG) scan.
Defined as an unexpected death occurring as a result of natural causes, SDS often affects young athletes like James, who was known as Jimmy.
“Jimmy was very fit and active,” his mum says. “He had no history of heart problems at all. He used to cycle about 40 or 50 miles each week. A couple of days before he was complaining that he had a chest pain and felt a bit dizzy.
“The doctor said he thought it was probably just that he was a bit run-down and his height – he was 6ft 6in. His balance was a bit off. Now I know that can be a symptom.
“I wouldn’t want any other parent to go through what we’ve been through. I would love to see routine screening introduced. It could save lives.”
Rock music fan Jimmy had his whole life ahead of him when he died. He had just me a girl his mum says he’d fallen for, had thrown himself into a computer manager degree at Northumbria University and was a popular, happy young man.
Christmas – with its emphasis on happy families – is particularly harrowing for his parents as it reminds them of what they’ve lost.
“We make a special effort for the grandchildren but it’ll never be the same again,” Ann says. “It’s the hardest time of year for us all. Jimmy was such a nice lad and we will always miss him. I don’t think you ever get over something like this.
“We’ve kept his ashes in our garden. When his dad and I die we want to be scattered all together. No parent should ever lose their child.
“The school where he used to go planted a tree for him, which is somewhere we can go to remember him.”
Ann, 53, and husband James, 50, agreed to be part of a CRY campaign to stress the importance of screening youngsters.
The couple also have a daughter, Paula, 32, who has two young children herself and they are petrified the same thing could happen to the youngsters if they aren’t screened. Recently Ann’s 10-year-old grandson was complaining of chest pains and the family managed to persuade doctors to check his heart. Fortunately the results were normal.
Now the couple are backing CRY’s campaign for routine screening in young, fit children to try and spot potential problems before they kill. Jimmy’s face appears on a promotional postcard carrying the message ‘Eight a week, and each loss is a heartbreak.’ It also features a photo of former cricketer Sir Ian Botham OBE, who is the charity’s honorary president.
The charity also has a number of other well known faces supporting it. These include Little Britain’s David Walliams and Sir Steve Redgrave CBE.
North Durham MP Kevan Jones is a chairman of the Parliamentary Group on Sudden Cardiac Risk in the Young, and a big supporter of CRY.
He got involved after being approached by active Labour Party member Jeff Morland, whose son Levon died in his sleep on January 3, 2002. He was only 22.
Twin Levon suffered from rare Wolff-Parkinson-White (WPW) disease, which causes heart flutters, but his dad says they weren’t told it could be fatal.
“Levon was diagnosed with Wolff-Parkinson-White disease when he was 12,” says Jeff, a divisional officer for trade union Unite.
“He didn’t seem right. He kept complaining about fluttering in his chest. We took him to the doctors and at first they said it was growing pains.”
“He was eventually diagnosed with WPW syndrome. They said it would be a nuisance but nothing more. His twin, Aran, asked the consultant if it was fatal the last time we were there before he died. He said not unless he were to jump out an airplane at 20,000ft.
“He was the kind of lad that just got on with it. He was a travel rep and worked at Camp America and things. He loved life. We had the Christmas with him and eight months after we were told his condition was a nuisance, he was dead.
“His mum Sandra went into his bedroom because his alarm was going off. She found him dead. “That’s when the horror started, it crushed us.”
There is an operation which can fix WPW but Levon’s family say they were told it wasn’t really worth having as he would be fine without it.
Since his son’s death, Jeff, 53, and wife Sandra, 45, of West Rainton, County Durham, have worked tirelessly to raise awareness and money for CRY.
So far they have handed over more than £120,000 to the Surrey-based charity.
With his political connections, Jeff and fellow campaigner Jack Doyle got MP Kevan Jones on board.
Jeff says: “There is very little awareness surrounding sudden death and getting information about the condition and what can be done is essential. In Italy it’s the law that professional athletes must be screened. It should be the same here.”
CRY’s aim is to introduce a national screening programme where schoolchildren can be tested for any of the conditions which may cause their hearts to suddenly stop working.
The lives claimed
Sudden cardiac death is believed to affect as many as eight young people every week. Sudden cardiac death in those aged 35 years or less is more common in males than females. Sports activity in adolescents and young adults is associated with an increased risk of sudden cardiac death. Sports activity does not appear to be the cause, but instead the trigger in those athletes who were affected by cardiovascular conditions predisposing to life-threatening ventricular arrhythmias during exercise.
There is an increased risk of sudden cardiac death associated with cocaine abuse.
Causes of sudden adult death include:
Arrhythymogenic Right Ventricular Cardiomyopathy (ARVC);
Hypertrophic Cardiomyopathy (HOCM);
Coronary artery abnormalities, including an anomalous coronary artery;
Myocarditis:
Dilated Myotonica; Wolff-Parkinson-White Syndrome, Mitral Valve Prolapse, Aortic Stenosis, Cardiac ion channelopathies such as Long QT Syndrome, Brugada Syndrome.
These conditions are sometimes also called Sudden Arrhythmia (or Adult) Death Syndrome – SADS.
Cardiac Risk in the Young provides information on these conditions, on its website http://www.c-r-y.org.uk.
Sporty youngsters stress their hearts the most. If they have an underlying cardiac abnormality they are more likely to be at risk.
