When Julie John's apparently fit and healthy husband, Dave, inexplicably died at 32, she was determined to find out why.  In doing so, she helped prevent her daughters becoming victims of the same fatal heart illness.

Julie John was waiting outside Portsmouth Harbour railway station with her eldest daughter, Danielle, and becoming agitated.  Her husband, Dave, was two hours late.

Julie lived with Dave, Danielle, 16, and their other daughter, Laura, 13, with Julie’s mum, Gill, on the Isle of Wight.  They had recently moved from Southampton to start a new life.

Dave had handed in his notice at Butlins, where he was a bar manager, and the family were moving to Kent to run a country pub.  Their possessions were boxed up and they were due to move in a few days’ time.  On that morning – August 3, 1994 – Danielle was due for a GP check-up and Dave was supposed to be getting off work at lunch time and picking them up at midday.  He never arrived.

After two hours, Julie took the ferry back to her mother’s house.  Gill was waiting for them in tears.  She had been visited by the police, who had told her a cleaner at Butlins had found Dave’s body in his chalet.

“When mum told me it felt as if a bomb had dropped on me,” says Julie, 40, who now runs a garden shop in Southampton.  “Dave was never ill and spent hours playing squash and rugby.  I couldn’t believe it.”

The pathologist said Dave died of natural causes and that for unknown reasons his heart had suddenly developed an irregular beat and stopped.

“For months I felt angry, says Julie.  “Not having anything or anyone to blame tied me in knots.  Danielle and Laura wanted to know how their dad had died but I couldn’t tell them.”

Julie slowly attempted to piece her life back together.  Two years later she watched a television programme about sudden arrhythmia death syndrome (SADS), a disturbing disorder that often remains undetected until it’s too late.

Also known as long QT syndrome, it affects the electrical system of the heart, causing a prolonged recharged cycle after each beat – a period of time knows as the QT interval.  Many victims appear healthy and have no symptoms until it kills them.

The condition is caused by dysfunction of protein structures in heart cells and can be inherited.  People who have a long QT interval are more vulnerable to an abnormal heart rhythm.  When that occurs the heart stops pumping and deprives the brain of blood, which can cause sudden loss of consciousness and death.

This can often happen during physical exertion of emotional excitement.  It also often occurs during sleep or upon waking up.

About 10,000 young people in Britain are thought to be at risk from the condition, which has been dubbed adult cot death.

“While I watched the programme, tears began streaming down my cheeks,” says Julie.  “I knew then why Dave had died.  Although I felt some relief, I was also petrified.  SADS was hereditary and I panicked that I would lose my daughters.

Julie wrote to Professor McKenna from St George’s Hospital in Tooting, South London – he SADS researcher featured on the TV programme.

A week later he phoned her and urged her to have her daughters screened.  “I took the girls to our GP”, says Julie.  “They were later referred to Southampton General Hospital for screening.”

The initial results from the electrocardiogram (ECG) returned negative.  Julie insisted that it should be carried out again.

Her scepticism was justified.  In 1998, after the second ECG results, Danielle and Laura were diagnosed with QT syndrome.  They were both told to make lifestyle changes immediately.  They weren’t allowed to exercise or play sport and had to avoid noise – anything likely to put a strain on their hearts.

Danielle and Laura were placed on beta-blockers to regulate their hearts but these drugs were fallible.  Anything that placed a strain on the heart could trigger SADS.

“Laura became really clingy and tearful,” says Julie.  “Danielle was stronger, although she was mortified that she couldn’t that she couldn’t do any sport.”

Julie removed alarm clocks from the house and let her daughters watch TV only if the sound was turned down.  She watched over them like a hawk, and rarely let them out of the house alone.

Her worries magnified when Danielle blacked out.  “We were chatting as we walked up the stairs,” she says.  “Next minute Danielle collapsed.  Her pulse wasn’t beating.  Thankfully she came round and let out a yell.  It was unnerving.”

Over the next year, Danielle experienced four further blackouts.  Inevitably, the restrictions imposed on the girls led to rows.  Danielle felt she was missing out on being a teenager.  While her friends went out to discos, she complained about being kept a prisoner.

“I did feel guilty,” says Julie, “but I was terrified that if I didn’t track their every move I would soon be arranging another funeral.”

Julie trawled the Internet for information about the latest treatments.  She found a support organisation called Cardiac Risk In The Young (CRY).

On the website she learned of an implantable cardioverter defibrillator (ICD), a small device that monitors heartbeats.  It detects irregular ones and delivers a life-saving electrical shock.

With the support of CRY, Julie battled for her daughters to have the implants, which cost the NHS £25,000 each. In October 2000, the girls got them at last.  “They can now go out alone,” says Julie.  “They can even use mobile phones.” 

Laura says: “For the first time I’m not scared I might drop dead.  I’ve now been swimming and playing hockey.”

Danielle says: “I’ve regained my freedom.”

Now Danielle and Laura, known locally as the bionic babes, are training to become counsellors for others who suffer from long QT syndrome.

Daughters story

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