It's like living Russian roulette - blackout fear

Sixteen-year-old Pauline Moyle stood up and walked to her crying eight-week-old baby.  She picked her baby up and then died.  The post mortem couldn’t find a cause of death but no inquest was held.  A few years before Pauline had blacked out during a swimming lesson.  The Moyle family were told the blackout was nothing to worry about.

Pauline’s parents, Kathy and Gerald brought up baby Vicky together with their two sons and remaining daughter, Lynn in Budleigh, Devon.

In 1984 when Lynn was 20, she had a son called Matthew.  In 1995 when Matthew was 11, he blacked out when swimming.  Lynn was also told by doctors that there wasn’t much to worry about.  He suffered another few blackouts and was referred to a paediatrician, who diagnosed epilepsy.  He was put on anti-epilepsy medication.  To this day the family doesn’t know why this diagnosis was made because the epilepsy tests were clear.

When he was 17, in 2001, Matthew saw a specialist again and he was found to be fit and well.  A week later he died.  His death was blamed on epilepsy and no inquest was held.

Before he died, he and his mother, Lynn, had started a new life with Lynn’s new partner and his son.  But Lynn also suffered blackouts and she in October 2002 – almost a year after Matthew.  

A few weeks after Matthew died; Kathy Moyle saw a television about a potentially disastrous genetic condition called Long QT Syndrome.  People with the condition can suffer fatal abnormal heart rhythms.  The symptoms include blackouts.  Kathy decided to investigate.

When Lynn died the family was armed with new information.  This time they demanded an inquest.  It was agreed that the coroner would ask a specialist cardiologist to examine Lynn’s heart.  But following a tragic series of blunders, Lynn’s heart was lost in transit.

At the time the news broke Kathy was in hospital.  She told us: ‘It seems so awful that we should give our permission for the heart to be taken and it was all a waste.  Our family may have lost out on the evidence and so, maybe have a lot of other people.

But Kathy is also angry about the way Matthew was treated.  After his death the family was told that he had two ECG tests before he died – both revealed that Matthew had Long QT Syndrome, but this wasn’t spotted by medical staff.

‘Why isn’t the NHS more geared up to deal with these conditions?’ asks Mrs Moyle.

‘In October this year Matthew will have been dead for two years and I don’t know if we’ve made any progress  - all I know is that I have lost another daughter.’

Kathy now 59, feels that she has had to fight the NHS every inch.  The family had to ask their hospital several times for a list of drugs that should not be taken by those who may have Long QT Syndrome.  They had to argue for a referral to a specialist for further checks and she feels the NHS, in Devon, at least, has no expertise in dealing with rarer cardiac conditions.

Kathy now worries for the rest of her family and her five grandchildren through her two sons and her three great-grandchildren.

‘Its live living Russian roulette.  The fear just hangs over you.  I don’t think this family can take any more.’