20 May 2018
By June Shannon
Maureen Kelly lost her only son Darragh to Sudden Arrhythmic Death Syndrome (SADS). He was just 21. If it wasn’t for her determination to get her family screened after Darragh’s death, Maureen may also have lost her daughter Eleanor to the same condition.
It is estimated that approximately 100 young people and children die in Ireland every year because of SADS.
In October 2003 Maureen Kelly from Greystones in Co Wicklow received the phone call that every parent dreads. Her son Darragh (21), who was attending college in Dundalk, had collapsed. She was asked to travel to Dundalk immediately and to bring the family.
“The nurse told me they were treating it as a cardiac arrest which I just couldn’t take in because Darragh was so fit and healthy. Then the whole horror began,” Maureen said.
“Darragh had been found by a housemate collapsed on the floor in his bedroom as he was getting out of bed. They called an ambulance which was there very quickly, but they couldn’t save him.”
“The nurse told me they were treating it as a cardiac arrest which I just couldn’t take in because Darragh was so fit and healthy."
Darragh died from SADS and Maureen described her experience as simply “horrendous.”
“It never goes away. It is as if it is yesterday. That was a shocking time. The worst was that when we got the post-mortem results nothing could be found; his heart was perfectly healthy.”
Maureen started to do her own research and on discovering that SADS was hereditary she immediately became concerned for her daughters, Darragh’s three younger sisters. Her fears were well founded as screening revealed that one of her daughters Eleanor had Long QT Syndrome. Thanks to the diagnosis and treatment Eleanor is now doing very well and living a normal life with a normal life expectancy.
“Eleanor was fitted with an Implantable defibrillator which has shocked her several times, so we know for a fact that her life has been saved through screening. She was 15 when Darragh died and it took about three years before she was finally diagnosed and treated. But it is wonderful that we haven’t lost her too,” Maureen said.
Darragh’s tragic death has had a profound effect on the entire family.
"The worst was that when we got the post-mortem results nothing could be found; his heart was perfectly healthy.”
“Darragh’s loss is always there at family occasions, anniversaries, weddings, my daughter’s wedding and the birth of her children, it’s always there. Darragh’s loss is always felt within the family.”
Maureen said she would urge people affected by SADS to get their families screened “these conditions are lethal but are very easily treated.”
“We would have certainly lost a second one and to lose one is horrendous but to lose a second I just don’t think I could bare it. We have come across families who have lost more than one child,” she explained.
"We have come across families who have lost more than one child,"
Maureen is the Chair and one of the founding members of the Irish Heart Foundation’s SADS Support Group – a group for parents who have lost a child to SADS.
The group is holding a healing weekend on 09 and 10 June next in the Hodson Bay Hotel, Athlone and Maureen said the peer support she received through these meetings and weekends was enormously helpful after Darragh’s death.
“I have been involved in organising the weekend every year since we started it has been very successful. Family members and people come back again and again because it is a very safe place to come. As the years go on people around you, family and friends don’t talk very much about our grief which is ongoing obviously for the rest of our lives. It’s a place where you can get together and talk to others openly because you know they know your pain.”
Ireland international Orla Prendergast is supporting the Irish Heart Foundation after losing her father to heart disease, encouraging people across Ireland to take small steps to protect their heart health.
Read More