AHEAD of next month’s Cazfest, SINEAD HOLLAND speaks to Caroline Johnstone’s dad Johnny about coping with his loss.
IN the depths of despair, a shaft of light shone in the darkness and gave a new meaning to Johnny Johnstone’s life. He was facing the bleakest moment any parent could. Caroline, his beloved first-born child, was in a coma and doctors had given the devoted dad and his wife Lesley the very worst news.
Johhny Johnstone
Their only daughter – the delicate baby who had grown into the family’s diplomat, a trusted sister to younger brother Ross – and to her many friends the very life and soul of the party – was gone.
There was no hope and no choice but to turn off her life support following her collapse at a nightclub.
Johnny left his 17-year-old daughter’s bedside briefly to grab a breath of fresh air to clear his head and found the way forward: a group of Caroline’s friends were the first thing he saw when he left the intensive care unit. They knew there was no chance of seeing the vivacious girl they called Fairy Caz, but they waited nevertheless.
That terrible day in June 2008 was when he realised he would do all he could to protect youngsters like them – and save other parents from the pain of losing a child to sudden cardiac death.
He said: “This one incident convinced me I had to do something. We were at Princess Alexandra Hospital [in Harlow] with Caroline in a coma and having been told there was nothing we could do, we would have to turn off the life support. I went outside and there were 20 to 30 friends hanging around outside, knowing they could not visit her, but wanting to be close to her.
“That struck me enormously and I decided that I could not do anything more for my daughter, but I could do something for other people’s.”
And so Cazfest – and the Caztest – was born. July 2’s musical extravaganza in Stortford’s Sworders Field – headlined by The Sugababes, The Overtones and Caz’s favourite group when she was a kid, S Club – helps finance a screening programme which has so far scanned 400 teenagers in the town for the kind of heart abnormalities that can be life-threatening and identified a number who need further investigation.
Johnny said: “With the music festival, it’s hugely important to remember that yes it’s about celebrating Caroline’s life and raising money, but it’s also about raising awareness of heart risk in the young.”
As part of the programme, Caztest finances the testing of a class of sixth-formers at participating secondaries. Even with subsidy from CRY, the charity which worked with the Johnstones in the awful aftermath of Caroline’s death, each student’s check costs around £30.
“We say to the schools, we will pay for the first year of screening and thereafter we would ask the school to take on the cost.”
The Bishop’s Stortford High School, where Caz was studying for her A-levels, is already into its second cycle. The Herts and Essex High School has joined the project, and both Birchwood High and Hockerill Anglo-European College, where Caz was also a pupil, are also getting involved and that is just the start of a project Johnny hopes will grow and grow.
The results of the ECG screening are confidential, but Johnny said: “Out of one class of 120 screened, six have been referred to their GP or a specialist.
“Of course it does not ease the loss of Caroline, but it gives us an objective and a focus – and pleasure and relief that we know 400 children will not die like Caroline.”
According to CRY, 12 young people die every week from undiagnosed heart problems. That Caroline became one of them is a cruel twist of fate for Johnny and wife Lesley – but one which reinforces their belief in testing for all.
Johnny recalled the arrival of his dainty little daughter, complete with a shock of dark hair which later turned blonde: “Caroline was born with a hole in her heart. It did not seal up when she was born and that was detected two to three days into her life.”
The mite was in and out of hospital for the next six months before the Johnstones, who live in Little Hadham, faced a further blow. During the repair operation, surgeons damaged a valve and a pacemaker was fitted to protect Caroline. It had to be replaced when she was four, but Caroline then thrived, becoming a bright and bubbly teenager who dreamed of studying for an English degree at Newcastle University.
At her inquest in 2009, the coroner was told that a post-mortem revealed Caroline suffered irreversible brain damage due to a sustained atrial arrhythmia, but that her fatal heart problem was not caused by the failure of the pacemaker.
Johnny said: “The irony is she was one of the best monitored children because of her previous condition, but that did not stop this happening to her.”
His quest now is to ensure other teenagers get the Caztest – and the chance to live
