THIS WEEK IT was announced that a new screening programme for Sudden Adult Death Syndrome (SADS) is to start at the Mater Hospital in Dublin.
Doctors say it will make it easier to detect the disease, as results from children and adults in the same family will be looked at together.
For years, families of young men and women who had sudden deaths were left in the dark about what really happened to their loved ones.
Now they want to shine the light on SADS, to push for more screening, for more defibrillators and for more members of the public to train in CPR so that other people can be prepared the next time it strikes.
‘Fit as a fiddle’
Richie Doyle, a sales rep from Bray, was 27 when he died in April 2005.
“Richie was fit as a fiddle, fitter than I was and I was the sports man,” his brother Robbie told TheJournal.ie.
He went to play football with friends as he always did on a Monday night and at around 10pm the phone rang at the family home. His father was told something had happened to him and, with Robbie, he rushed to the scene.
“It was pitch black, all I could see was the ambulance’s flashing lights. Richie was on the ground.”
I talked to my other brother, Derek, who had been there and he said he had been perfect during the whole night, he hadn’t been complaining, he’d been perfectly fine. The lights finished at ten and Richie just fell to the ground.
The young man was taken to hospital where he was later pronounced dead.
“It was a huge shock. We were such a close family – still are – and it took the wind out of our sails.”
The Doyle family still do not know exactly what caused Richie’s death.
“I still can’t get my head around it, he just went to play football and never came home,” his brother said.
This lack of certainty is something that also plagued Maureen Kelly, who lost her son Darragh more than 12 years ago.
The 21 year old was suffering from flu-like symptoms and had a fever, something she believes was a precipitating factor in his death.
“I had just spoken to him an hour previously,” she told TheJournal.ie. “Obviously, he just dropped suddenly. It was horrific because we’d never heard of SADS, we didn’t know anything about it.”
I couldn’t believe that Darragh had died of a heart condition because he was so fit and healthy.
It took four months for the results of his post mortem to come back and the examination found nothing. The results said he was a perfectly healthy young man when he died.
Maureen started to do her own research – “Darragh died of something,” she said – and she came across SADS.
I remember trying to pull myself out of bed, just to keep functioning. I was talking to myself, saying: ‘Come on Maureen, the worst thing the earth can throw at you has happened, nothing will be as bad as that’.
When I came across SADS, I saw most of the conditions are inherited. Then I was aware that I was more at risk of losing another child. That’s the most dreadful thing about this condition, you become aware that you’re possibly likely to lose another after you’ve already lost one.
She eventually managed to get her three daughters tested through a screening programme in Ireland and one of them was found to have a heart condition. Eleanor now has an implanted defibrillator and is on medication.
“She lives a very normal life, with a normal life expectancy. She was a sports player, she played camogie and Gaelic football, but she saw the devastation caused in our family so she was quite happy to give those up,” Maureen explained.
“What was alarming was that six months after her defibrillator was implanted it shocked her appropriately. It has done that three or four times since.”
She said she is certain that through the intervention and treatment, her daughter’s life has been saved.
Maureen is now the chair of the Irish Heart Foundation’s SADS support group which she said aims to “support families and affect change so that others may live”.
“Unfortunately, we will never, ever eradicate it. There will be families like ours who will have no idea, but more and more doctors are diagnosing conditions that can cause it now and that work should continue.”