Heart tests for Jake, 9

Doctors check dad's death link

A nine-year old Exeter boy whose father died suddenly, aged just 32, is to undergo a new series of tests on his heart to see if he is at risk of the same condition. 

Mother-of-two Donna Pyles’s son Jake, nine, will be given tests at Great Ormond Street Hospital in London following a visit to a top heart specialist in the capital.  Mrs Pyles’s other son Jamie, five, does not appear to need the further tests at this stage. 

Meanwhile, the Royal Devon & Exeter Healthcare Trust has sent tissue samples from Mrs Pyle’s husband Andy’s heart to undergo genetic testing at a laboratory in Oxford.  The tests could establish if there was a genetic cause behind his sudden death almost four years ago. 

Mrs Pyle, 30, of Shakespeare Road, Wonford, has been trying to get her husband’s heart tissue tested to establish whether he had a hereditary strain of the heart condition called Long QT Syndrome, which can cause the heart to stop suddenly.  And she wants her sons to undergo genetic tests to see if they have inherited the condition. 

She has met top heart specialists in London for an initial consultation, which was arranged through her GP and the charity CRY – Cardiac Risk in the Young. 

Mrs Pyle’s two sons each had an intensive session of initial tests, including X-rays and electro-cardiographs, to check the rhythm of their hearts. 

Mrs Pyle and her sons met members of cardiac specialist Professor William Mckenna’s team at the Heart Hospital in London. 

She said: “The doctors said Jake needs to go the Great Ormond Street Hospital in six months’ time for further examination.  But they said there is no need to panic. 

“Both boys are in safe hands and are OK for now. 

“The tests showed that Jamie is fine for the time being – but he will be having yearly ECG heart tests and monitoring in case something does develop. 

“Professor McKenna was lovely and he explained that genetic testing might be able to help. 

“He said that even if it doesn’t show Long QT Syndrome, there could be a hundred other genes that may have caused my husband’s problem. 

The testing could identify which one it was, although tests can't show them all.  His team have told me that I can contact them at any time.” 

Long QT Syndrome causes an electrical disturbance in heart cells, disrupting the normal rhythm.  Symptoms can include black-outs and palpitations.  Treatments to control the condition include fitting a pacemaker or using drugs to regulate the heart rate. 

The couple had been married for almost five years when Mr Pyle died of Sudden Adult Death Syndrome – a term used for the many causes of sudden unexplained cardiac arrest. 

Mrs Pyle also has a daughter Gemma, 13, who has been supporting her mother’s campaign. 

The Royal Devon & Exeter Healthcare Trust said doctors were continuing to offer the family the best possible care and wanted to help Mrs Pyle. 

A spokesman said: “We remain in close contact with the family and wish them well. 

“We have arranged for Mrs Pyle’s sons to be seen for follow –up examinations by a paediatric cardiologist in Bristol, and have also made arrangements for genetic testing to be carried out.”