Irish Independent Tabloid-Health & Living Supplement
Irish Independent
SADS has claimed many young Irish lives, writes Sarah Breen
In June 1996, Peter Greene finished his Junior Certificate exams and went out to celebrate with a round of golf. The apparently fit and healthy 15 year old came home, went to bed and was dead less than 24 hours later.
“Peter was the youngest of four children,” says Peter’s father, Michael Greene.
“He was full of life and loved sport – sailing particularly. He also played rugby. He was a bit of a class jester but a perfectly good student. Subsequently we found out that he scored highly in his Junior Certificate”.
On the day he died, Peter was excited to wave goodbye to a stressful year and herald the start of his summer holidays.
“The day Peter finished his exams, he went out playing golf with some of his friends,” says Michael “He came in, said he was tired and went to bed. I was away on business that night but my wife Marie heard him getting up at about 3.30am.
“He got sick and told her he couldn’t see and that he had a terrible pain in his chest, so she rushed him in to Beaumont Hospital”.
Within an hour, Peter was dead. “At that time there was very little known about this condition, by the public or indeed by the medical profession”, says Michael.
His cause of death was established as myocarditis, which is a virus that attacks the lining of the heart.
Afterwards we discovered it was a bit more complicated than that.”
Sudden Arrhythmia Death Syndrome (SADS) is an umbrella term for all the electrical conditions that can cause sudden cardiac death in young people, although it can happen to older people too.
“Between 60 to 75 people under the age of 35 die in Ireland every year as a result of sudden cardiac death,” says Dr Deirdre Ward, a consultant cardiologist at Tallaght Hospital. “Perhaps half of them are due to SADS, and the rest are down to muscle disorders and things like congenital heart disease.”
“I heard a lovely description about the impact of a child’s death on a family the other day by a man in New York,” says Michael. “He said that if your parents die, you’re an orphan; if your spouse dies, you’re either a widow or a widower; but there’s no word that can describe the death of a young person.”
Following Peter’s death the Greenes began looking for answers as to what may have been the root cause.
“Marie’s questions led her to a charity in the UK and because of her background in social work, she was invited to do a programme in Warick University on supporting and counselling families who were affected by this condition. We then decided to set up our charity, Cardiac Risk in the Young (www.cry.ie). E set up ourselves three objectives to; increase awareness of this condition among the public, to offer support to families who were either affected by the death of a young person or who had somebody living with the condition, and to develop a cardiac evaluation programme here in Ireland.”
Peter, a healthy and fit 15 year old, went to bed and was dead less than 24 hours later.
In 2004, the sudden death of footballer Cormac McAnallen brought SADS conditions into the spotlight.
The 24 year old Tyrone captain was at the peak of physical fitness when he was found dead in his bed.
“The conditions that cause SADS have only really been described since the 1990s,” says Dr Ward.
“And it’s only been in recent times where a family would accept that a young person could die suddenly. Doctors would come up with lots of other potential reasons for the death, like acute pneumonia, that might distract from the true cause.
“It’s really only since Cormac MacAnallen’s death that people have started to accept that young, sporty people can die suddenly from a heart condition.
Before then, there was an expectation that was probably due to drugs or something self-inflicted rather than something they were born with”. After knocking on a lot of doors, in 2006 Michael and Marie Greene and CRY were eventually approached by Dr David Mulcahy, a cardiologist at Tallaght Hospital, with a proposal to develop a centre for cardiac screening in Ireland.
“The Centre for Cardiovascular Risk in Young persons at Tallaght Hospital officially opened in early 2007,” says Michael.
“We receive no government support but provide free services like screening, a family support group and a qualified psychotherapist, which is very important, particularly for families with young children.”
Cardiac screening is one way to prevent sudden cardiac death in the young and it is one of the most valuable services offered by CRY. Although screening can be invaluable in a family where one member suffers from a SADS condition, it’s just not viable to have the general population tested.
“Screening is not perfect or guaranteed to get a result”, says Dr Ward. “First of all, the conditions are relatively rare in the general population and also they can be very difficult to detect. It’s about finding a test that can correct identify one of these conditions, and finding the right time to do it because some of them won’t be present at birth but can develop over time”.
“Since peter’s death, the whole family has been screened for SADS conditions but there’s nothing there,” says Michael.
“We now think he died due to a genetic condition and not a virus but we still don’t really know. Even knowing what we know today, we would probably have still lost him. The truth is, you can have the condition and be monitored and you can still die from it”.
For more information on Cardiac Risk in the Young and how you can support its upcoming Fashion Show and Luncheon (March 22) and Rugby Lunch (March 8) see www.cry.ie.