Deaths they can't explain: Families talk of sudden collapse and SADS.

Sudden Adult Death Syndrome (SADS) can kill any one of us at any time, leaving grieving families with no explanation as to why.  In the run up to Arrhythmia Awareness Week, from Wednesday May 12^th to Tuesday May 18^th Deborah Tucknott, talks to two families whose apparently fit and healthy loved ones collapsed and died unexpectedly.

It was the death of his brother, James, which effectively saved Duncan Graham Rowe’s life.

When James died suddenly in 1991, a post-mortem examination found no reason why.  He was a victim of Sudden Adult Death Syndrome (SADS), even though back then there was no such term.

Then Duncan, 34, suffered three collapses himself and tests revealed he was suffering from a genetic heart disease, Brugada Syndrome, which he now knows killed his brother at the age of 26.

Today Duncan leads a normal life, after being fitted with a defibrillator that will kick his heart back to it usual rhythm if the disease causes the beat to become irregular and lead to a collapse.

Tragically, the first sign anything was wrong with James was his death.

A fit and active man, he was staying with relatives, when, in the middle of the night, his girl friend woke to find he was turning blue.  While they waited for an ambulance, his aunt tried to resuscitate James but he was dead before the paramedics arrived.

Duncan said; “He was not ill, he was not sick in any way and he had no disease as far as he knew”

The Coroner was so dum-founded  he ordered three post mortems before calling the family to apologise for not finding a cause.  He recorded James’s death as natural causes.

Duncan said “It was not as though they had a label for it.  Back then they did not have an awareness of SADS.

“I used to have a real problem when I had to tell people my brother was dead   They would inevitably ask me why and I did not have an answer I felt was adequate, I could not explain it.”

Several conditions that involve an abnormality of the heart beat, called an arrhythmia are responsible for SADS but they do not show up after death. If discovered in time, they may be treated with betablocker medication  or a defibrillator, sometimes structural heart disease may be responsible for the death but if there is not enough evidence the pathologist will not be able to confirm it as a cause.

Eighteen months after James’s death, while he was living in the US Duncan then 22, had his first collapse..  He was completely unaware of what was happening and his friends thought he was messing around.

Two years later it happened again and this time Duncan was tested for epilepsy.  Doctors found nothing but said it was possibly some sort of epileptic fit.

In September 2001 Duncan collapsed again while he was in Washington.  A reading of the electrical activity of his heart (ECG) showed an abnormality.  When he got home he went for tests and was in hospital for four weeks.

Doctors discovered he had Bruganda Syndrome, which can suddenly stop Duncan’s heart beating properly without any notice.  It is a disease that is common in Thailand but is rare in this country and was only discovered ten years ago.

The Disease, also called widow ghost, is hereditary and mainly affects men.  As it only affects the electrical activity of the heart, it has no physical traces and can be impossible to detect.

After Duncan was diagnosed, other members of his family were tested.  His daughters aged one and four, are tested every six months but as they are girls it is unlikely the disease will affect them.  However, the tests are not completely reliable.

So far Duncan’s defibrillator has had no need to kick in.  If his brother had not died and alarm bells had not been raised, Duncan may never have found out about the disease.  He said “It looked like my brother was very unlucky.  The first time it happened it killed him.”  “In a strange way I should feel grateful for his dying because if it wasn’t for his death I and other members of my family may have mysteriously died too.”

In studies no cause could be found in more than four per cent of sudden deaths of apparently healthy adults below the age of 65 but experts believe the figure for SADS, which affects children and adults, could be just the tip of the iceberg.

Stoolball

Tony Hughes was a fit and healthy 35 year old who loved playing football and stoolball.  He was out on the soccer pitch at least twice a week and he and his wife, Debbie, took part in a sky dive in June 2001.

The gentle, warm, affectionate and popular store manager had only suffered common childhood diseases in his life.

Then on March 21st 2002, while on the telephone at work, Tony, who lived in Eastbourne, suddenly collapsed and died.

His mother, Angela, 56, was working at Seaside Medical Centre, Eastbourne, where she is the centre manger, when she received a phone call telling her she needed to go to the hospital quickly.

She said “They showed us into a private room and explained they had been working on him for 40 minutes but there was nothing they could do.   He literally collapsed.  He fell straight down while he was talking to someone and he was dead.  I thought perhaps he had just had a blackout. You never think of anything such as losing some one.” 

A post mortem was carried out and his organs were sent to a London hospital to be examined but specialists they found nothing wrong.

It was five weeks before the family was able to bury Tony. At the inquest, the coroner recorded a verdict of natural causes and a specialist said he had been a victim of SADS, like James, it is likely Tony had had an arrhythmia.

There had been no history of heart problems of SADS in Tony’s family but after his death Angela lived in fear other members of her family, including her niece and nephew, might be struck down.  She said “I worried for every one, at that time we did not know if it was going to affect other members of the family.  I had all these terrible feelings, my mind ran riot.”

Angela and Debbie, 35 have coped with Tony’s death by raising money for charity which persuades people to have screenings for heart defects and by raising awareness of SADS.  

She said:” It took many months to really accept Tony was not going to walk through my door with his usual happy face”.  “He was my only child and I loved him to bits, I miss him every single day of my life, I don’t think I will ever be the same again.”

Angela is currently co-producing an Open Weekend Gala Charity Concert to raise awareness of SADS.  A host of entertainers have been lined up for the concert.

The evening at the Devonshire Park Theatre , Eastbourne, on Sunday, aims to raise awareness about SADS  in the run up to Arrhythmia Awareness Week.

The line up includes singers Steve Bingham and Carol Hunt, comedian Keith Loads, drag queen Dame Eva Brique,  the Janice Blake School of Dance and the all female Bexhill Barber Shop Harmony Singers.

Entertainer and co-producer Harry Lederman will be performing stage songs and Audrey Freemantle is responsible for the musical accompaniment and arrangement.