Wednesday 28 September 2016

Irish mum on losing her son to SADS - 'I can still remember the sound when they turned that machine off'

One day 24-year-old Mark Fleming, a father of one, went to bed and never woke again. His mother Josephine tells Joy Orpen about coming to terms with losing her young son to sudden arrhythmic death syndrome (SADS)

Joy Orpen

Published 15/02/2016 | 02:30

Mark Fleming, Devon’s dad, who died from SADS.
Mark Fleming, Devon’s dad, who died from SADS.
Josephine and Roy Fleming with their grandson, Devon. Photo: Dominick Walsh.

Josephine Fleming's main goal in life has always been to take very good care of her four children. "I never wanted to do anything except get them to school, and to be there for them when they came home," she says.

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In between the eldest, Robert, and the youngest, Ashley, came the twins, Mark and Lee. Josephine's husband, Roy, had three other children from his marriage to his first wife, who died at a young age. "His kids, Roy, Joanne and Brian, have always been very much part of this family," says Josephine. "There was never any step-this or step-that with us."

Referring to the twins, she says jokingly, "They were identical and they were divils. The neighbours could never tell them apart. When they were playing football, the spectators would roar, 'Come on, twin', regardless of which one was making the play." The Flemings live in a vibrant community in Glin, Co Limerick.

Mark and Lee were inseparable from birth. "When Lee was hospitalised with asthma, Mark couldn't settle at home," Josephine says. During their time at Tarbert Comprehensive School, this lively pair set some challenges for parents and teachers alike.

"They were always up to mischief," says Josephine. "On one occasion, Mark removed the ballcock from one of the toilets, and flooded the school. We were always being called in because of something they'd done. But when we went to the parent-teacher meetings, the teachers didn't have a bad word to say about either of them."

She says both twins did well in the Leaving Certificate. Mark then did an apprenticeship in metal fabrication with Foynes Engineering. And soon after, he bought a bright-red Honda Integra and souped it up. "Cars were his passion," says Josephine. "He didn't want just any old car; it had to be sporty."

In his first year of secondary school, Mark met Samantha Parkinson, and so began a long, loving relationship. When Mark was 21, their son Devon was born. That was four years ago. "Mark was absolutely thrilled," says Josephine. "But sadly, six months later, Mark and Samantha separated. Nonetheless, they remained very good friends." By then, she says, Mark had developed a big personality and great sense of humour.

Devon spent weekends with his dad, visiting attractions and playing games on the beach. In time, Mark met Rachel Ward, and they set up home together. "She's a lovely girl, who adored Devon from the start," says Josephine. On Easter Sunday night, in 2014, Mark and some friends went out to celebrate Rachel's birthday. Later, the couple had a cup of tea before bed.

Early the next morning, Josephine got a call from Rachel to say there was something terribly wrong with Mark. So she and Roy raced over and were shocked to see squad cars, ambulances and people massed outside the house. "The paramedics were working on Mark, so I wasn't allowed upstairs," says Josephine, her voice quivering with emotion. "When they finally brought him down on a stretcher, he had tubes coming out of him, his eyes were flickering, and when I touched him, he was warm. So I still had hope."

Mark, who was just 24 years old, was rushed to hospital. Josephine soon learned that early that morning, Rachel had woken to the sound of Mark gurgling. She tried to rouse him, but failed to do so. So she called her parents who lived nearby, and they rushed to the house. Her father, Charlie Ward, performed CPR in a valiant effort to revive Mark. Meanwhile, emergency services were called.

At the hospital, Josephine remained optimistic. "I still thought Mark would be fine, because no one had come to ask me any questions," she says. "But then the doctor brought us in." They then got the tragic news that there was no hope for their beloved boy. "They asked my permission to turn off his life support," explains Josephine, with tears rolling down her face. "I pleaded with them to wait until the others came to say their goodbyes. At the end, they were all there, and the chaplain said a few words. I can still remember the sound when they turned that machine off. It was the most horrible time of my life. To lose a child is definitely the worst thing that can ever happen. To this day, I cannot drive past that hospital."

The family brought Mark home and held a wake. "It was absolutely huge," says Josephine. "People started coming through the door at 4pm, and they didn't stop until 11.30pm. He was fiercely popular." Mark was taken to St Brendan's Church of Ireland in Tarbert, Co Kerry, and buried at Kinnard Cemetery, Co Limerick, about 6km away. At one point, a bumper-to-bumper cavalcade of modified, high-performance cars stretched back for miles.

Following an autopsy, the family learned that the cause of Mark's death was sudden arrhythmic death syndrome (SADS) - which used to be known as sudden adult death syndrome. But because it also affects infants and children, this term is now more common. "It was caused by an electrical fault in his heart," explains Josephine.

Soon after the tragedy, the whole family went to the Family Heart Screening Clinic (FHSC) at Heart House, near the Mater Misericordiae University Hospital in Dublin. "That was the longest drive ever," says Josephine. "We didn't know what we were facing. But every one of us was tested and found to be in the clear. They were just brilliant there."

Dr Joe Galvin of the FHSC says, "When you have a history of sudden cardiac death, you need family screening conducted in one location, so knowledge and information can be shared. It also avoids the need for several appointments."

The Fleming family is determined to support the work being done by the FHSC. On the first anniversary of Mark's death, a "car cruise" travelled along Mark's favourite motoring route, to raise funds for the clinic. "Everyone who participated donated a fiver," says Josephine.

Today, if you visit Mark's grave, you will see at least one candle flickering in the wind. "That grave will never be dark as long as we're alive," says a fiercely determined Josephine.

"My message is this; cherish everyone close to you and tell them you love them, before it is too late."

The Family Heart Screening Clinic receives no government funding. Donations to the Mater Heart Appeal can be made online, see heartappeal.ie or text SADS to 50300. The Mater Foundation, tel: (01) 830-3482, or email heartappeal@materfoundation.ie

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