Irish Farmers Journal-Country Life
Saturday, 26 February 2011
Dealing with SCD
Between 70 and 100 young Irish people will die suddenly and unexpectedly this year. Margaret Hawkins examines the impact of sudden cardiac death on families left behind. We also ask what symptoms to look out for, what screening involves and where a family can get support.
Don’t even try to imagine it. It’s horrendous. That’s according to teacher Maureen Kelly, in relation to losing a son to sudden cardiac death (SCD). “You wouldn’t want to know. For someone fit and healthy to die suddenly like that … we’ll never get over it.”
Maureen’s 21 year old student son Darragh died on 1 October 2003. She had talked to him on the phone 20 minutes earlier. Prior to his death, Darragh’s family had never heard of sudden cardiac death syndrome.
Maureen is a founding member of the Sudden Death Cardiac Group, which offers support to families dealing with such tragedy.
Screening of other family members was hugely important for Maureen and her husband Matt after Darragh died. It took three years to get this screening done, however, as there was no family screening available in Ireland at that time.
One daughter, Eleanor, was later found to have an inherited heart problem, Long QT syndrome, where the heart doesn’t recharge quickly enough – the condition that is thought to have caused Darragh’s death.
In 2007, Eleanor had a defibrillator implant (ICD) fitted. It has saved her life twice since then, shocking her back to life after her heart malfunctioned once when she was awake and once when she was asleep. Thanks to the computerized implant she now lives a normal life and has a normal life expectancy.
“As a result of all this, we want to get across to people the importance of screening,” says Maureen.
TWO SCREENING CLINICS
Two screening clinics were set up in 2007, one In The Mater and the other in Tallaght hospital. “They are funded purely by voluntary donations,” Maureen says.
“We are fighting to have the recommendations of the Government task force report implemented. It said there should be HSE-funded screening centres in each region. None of this has happened.”
Maureen also believes that GPs and cardiologists need to be better educated about SCD. Family history is also a very important part of the screening process, Maureen says. “Any sudden death of a person under the age of 40 in the family history is considered to be of possible significance. That includes deaths by drowning, car crashes and sudden infant death syndrome (cod death) or stillbirths.”
ANOTHER FAMILY’S STORY
The farming McDonnell family from Cloneyhurke, near Portarlington, Co Laois has also experienced the trauma of losing a loved one to sudden cardiac death.
Father of three Mark McDonnell died on 24 October 2010. He was only 30 years of age. He loved fishing, shooting and kick-boxing and had been feeling well up to the time he died. That Halloween bank holidy Sunday morning will never be forgotten. Mark’s wife Lisa tells us what happened; “When I woke Mark was lying on his side facing me. His eyes were open and all I could hear was a deep sort of noise, and then there was no breath. “I just shook him, shouting his name. My phone wouldn’t work, so I shouted out the window at a neighbor to ring the ambulance. My brother gave him CPR, then the ambulance team took over, and we followed the ambulance to the hospital. “
As we waited, a nurse came in to say they were doing everything they could, but it wasn’t looking good. Then the doctor came in to say there was nothing more they could do. It was so hard to believe. It still is. They told us it was sudden adult death syndrome. They don’t know why it happens, it just happens.
“His heart has been sent away for analysis, but it won’t be back for eight or nine months. For the kids sake we want to find out what caused his death. We will be looking into getting them tested in the future.
The hardest part about him dying was that he was just getting back on his feet after we lost a little girl, Gemma, at birth, in January last year. Mark took her death very badly. He was just beginning to find himself again, and then for that to happen, without any warning …
“The children don’t’ really understand it. Sarah is eight, Raymond is six and Michaela is five. Everyone is still in shock, really. The only thing that ever happened to Mark in the past was a pain in his chest years ago, when he had pleurisy. Doctors reckoned it was a panic attack at the time, but no one knows if that incident is in any way connected,” says Lisa.
MARK’S HEART IS MARK
Mark’s mother Maureen McDonnell, along with her husband Ray and Mark’s brothers and sisters also find it difficult to believe that Mark has passed away. “You think he’s going to drive into the yard any minute,” Maureen says. “It’s absolutely dreadful.” They let us heart go for testing, she says, because of his other brothers and sisters and his children. “Knowing what happened may help one of them in the future. That’s why we feel it’s important to get everyone scanned. But if Mark’s heart was buried with him, we would be a lot happier. To me, Mark’s heart is Mark.”
WHAT THE DOCTOR SAYS
The causes of sudden cardiac death can be many and complex, according to Dr. Angie Brown of the Irish Heart Foundation.
These can include coronary heart disease, congenital abnormalities (present at birth) and what are called cardiomyopathies (heart muscle problems) as well as “electrical” problems with the heart.
“Inherited arrhythmias (irregular heartbeats), such as Long QT syndrome, can be difficult to diagnose,” she says. “In these conditions, the heart looks normal, but the conducting system is abnormal.”
WHO SHOULD BE SCREENED
All immediate relatives of an affected individual should be screened, according to Dr Brown. “Depending on those results, further family members may be advised to attend for screening. We don’t advocate widespread population screening, but we recommend it for anyone (of any age) who has the following symptoms:
• Chest Pains
• Dizziness
• Breathlessness
• Palpitations or
• Blackouts (fainting without warning)
GAA – SOME SCREENING
While there is a perception that sudden cardiac death occurs only in sports enthusiasts, this isn’t the case, according to Dr. brown, although sport can be a trigger.
In relation to screening, she points out that the GAA has now introduced some testing of players.
“they have a useful questionnaire, Dr Brown says. “It is short and goes into family history and symptoms.” To find it on the web, go to www.gaa.ie/cardiac screening.
“You will see that they comment on the down side of screening, which is that many teenagers and athletes have mildly abnormal ECGs that are of no consequence. This may lead to often unnecessary investigations and worry for the individual, however and in some cases advice for the individual to stop playing competitive sports. It is therefore always important that people understand the possible consequences of screening,” explains the doctor.
“Furthermore, screening may not pick up an abnormality, so individuals may also be falsely reassured. For example, some of the heart muscle changes may not develop for many years.
“It’s therefore important that any investigations are carried out by fully trained individuals so all these issues can be explained and appropriate investigations and referrals performed ,” she says.