Couple want condition which killed son to be recognised like meningitis

The parents of a boy killed by a heart defect are campaigning for nationwide cardiac screening. 

Nigel and Jenny Cole believe a widespread screening programme can prevent hundreds of deaths a year.  Jeremy Cole was 14 when he collapsed and died of Sudden Cardiac Syndrome (SADS). 

The condition develops in children and young people and can strike with few symptoms. 

Now the Coles, of Victoria Drive, Eastbourne, are backing a campaign to make the syndrome, which is usually hereditary, as well known as meningitis so that parents will pick up on warning signals. 

They have produced a postcard with charity Cardiac Risk in the Young (CRY).  It features photographs of eight youngsters who have died from SADS, including Jeremy and one child aged seven. 

Mrs Cole said: “You see these young faces and it suddenly hits you that they are all dead.  Eight is also an appropriate number as it’s estimated that at least eight people die from SADS every week.” 

CRY was set up in 1995, coincidentally the year of Jeremy’s death. 

A sporty, healthy teenager who loved skiing and cycling, his mother was concerned when he blacked out without warning one day.  Feeling instinctively that it was not a normal faint, she read medical books and realised his symptoms matched those for a heart defect. 

She said: “I told myself it couldn’t be that.  A child with heart problems would be pale and weak but Jeremy was a bundle of energy.  But it was.” 

The medical term for Jeremy’s condition was Hypertrophic Cardiomyopathy or thickening of the heart muscle.  There are other forms of Cardiomyopathy that also cause SADS in young people. 

Jeremy went for an electrocardiogram (ECG) scan of his heart but the doctor who checked it was unfamiliar with cardiomyopathy and did not pick up the problem. 

Jeremy had one more dizzy spell and a few days later passed out and died while with a friend. 

Jenny said: “We hope the campaign will stop other families going through the same loss.” 

Sufferers may experience breathlessness, chest pain, heart palpitations, dizziness and fainting attacks but some have no symptoms. 

For this reason CRY and the Coles want to introduce routine ECG screening in schools for teenagers. 

The Coles have already raised money for three ECG machines, two at Eastbourne District General Hospital and one at their local GP surgery.  They have also made sure a chapter on the condition is included in the National Service Framework on coronary heart disease. 

Find out more about Hypertrophic Cardiomyopathy