Why SADS is baffling doctors and families around the country

Family Heart Screening Clinic

There is only one screening clinic in the country currently.

Two months off his 21st birthday, Ciaran Carr collapsed and later died during an indoor training session with the Clondalkin Round Towers football team.

The nearest defibrillator was half a kilometre away, too far to save the seemingly healthy young man.

Last weekend, a 15-year-old Junior Cert student from Galway died after collapsing during a football match.

Merlin Woods player Hassan Taiwo suddenly collapsed on the pitch while he was playing against Salthill Devon on Sunday afternoon.

Emergency services rushed to the scene and the match was suspended as medics tried to resuscitate the teenager. A post mortem examination was carried out on the teenager at University Hospital Galway and is expected to confirm ‘natural causes’ for the sudden death – Taiwo hadn’t suffered any injury during the match.

The same phenomenon has hit the celebrity world. Actress Sarah Goldberg died last month. Her mother said that Goldberg just “went to sleep and didn’t wake up”. She was only 40.

In a statement, her mother, Judy, said that an autopsy had failed to determine the exact cause of death but that a heart ailment is suspected.

This is a harsh reality for many families both in Ireland and around the world today: young, seemingly healthy people dying without reason and autopsies proving inconclusive.

A condition called Sudden Arrhythmic (or Adult) Death Syndrome (SADS) may be the cause of death in all these cases. It is similar to Sudden Infant Death Syndrome in which the cause of death is unexplained.

Experts estimate that one young Irish person under the age of 35 dies suddenly from cardiac disease almost every week.

What is SADS?

According to the Irish Heart Foundation: “The heart has an inbuilt electrical system, which makes it work. If this is interrupted, the heart cannot pump enough blood around the body. Without a supply of blood pumped by the heart the brain can’t function, the victim faints and death follows within minutes. If treated quickly with an electric shock delivered by an automated external defibrillator (AED), normal heart rhythm can often be restored (the survival rates decreases by 10% per minute).

“A sudden cardiac death may be the first sign that the victim has had of a heart problem. In many cases, no definite cause of death can be found, even at autopsy. These deaths are thought to be caused by an arrhythmia and are labelled a Sudden Arrhythmic Death (SADS).”

What causes it?

“SADS can be caused by a number of different heart problems, many of which are inherited,” the Irish Heart Foundation says. “Some of these conditions include Coronary Heart Disease, Cardiomyopathy – heart muscle problems, Heart rhythm abnormalities, Diseases of the heart valves, and Disease of the heart’s electrical system, such as Wolff Parkinson White Syndrome.”

100 or more people under 35 years die in Ireland each year from sudden cardiac death, according to the Irish Heart website.

Working against SADS

Heart House on Eccles Street, DublinA spokesperson from The Family Heart Screening Clinic at the Mater Heart House on Eccles Street took the time to talk to me about SADS and how they are working to make people more aware of the condition and if it can be prevented.

They explain:

“SADS often gets misquoted, the collapse is called a cardiac arrest but usually in an older person doctors will be able to find a reason for that person dying, most likely blocked arteries or a heart muscle problem, which is usually something associated with the aging process or their lifestyle choices. However in a younger person, younger than 40 say, doctors are less likely to find these sort of problems. So when a young person dies and when the post mortem shows inconclusive, that’s what SADS is.

“It’s often only young sports players who we hear of dying from SADS, that’s simply because it gets more publicised. However many young people die at home from SADS, on their couch or in their bed, For example Cormac McAnallen the senior Tyrone football captain died at home in his bed, not out on the pitch. At the time his death was unexplained, but doctors went on to find the family had a genetic heart condition and that was the most likely factor in his death.”

“What the Family Heart Screening Clinic here in Dublin do is look at families who have heart problems in their genes and we look to see if someone young in their family has passed away. You might be wondering why is it worth coming to us for screening if SADS won’t show up, well we know the signs to look out for here in the clinic. There’s a few things that will show up on an ECG (a graph of someone’s heartbeat) on someone who is alive and well and if we see any slight changes on that graph then we know you could be at risk. However on somebody who has died, that change doesn’t leave a scar on the heart tissue and therefore it won’t show up on scans in a post mortem and that is SADS. So if there is a family history of SADS or if an ECG is showing up any abnormalities, that person will be referred to come see us at the screening clinic. A good number of families who come for screening, I would say between 30% and 50% will get a diagnosis that they didn’t know they had. In turn we would then advise these people as to certain medications they should avoid which could trigger SADS, or if they should avoid intense exercise or sports which could also be a trigger for these people. ”

The clinic has been open since 2007 and all the screening and care provided is funded by generous donations to the Heart Appeal at the Mater Foundation.

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