Saturday, February 28, 2009

Heart condition can be linked to seizures!

CARWYN Jones was a healthy 24-year-old who one day, after watching Wales beat France in the Six Nations, collapsed and died just seconds from his front door.

The keen rugby player from Rhydfelin had not been drinking heavily and had no health problems, so when doctors told his mum they had no idea what had caused his death, an earlier tragedy was brought back to the family.

While still grieving for her son, Carol Jones, now 63, was forced to ask herself whether she had lost one of her other sons years ago of the same condition she would later find out claimed the life of Carwyn, inset.

Thirty-four years ago, Carol and husband Bill’s three-year-old son Geraint died four days after being admitted to hospital with suspected meningitis, whilst Carol, a learning disabilities carer, was in hospital preparing to give birth to son Gafyn.

She says she was later told by a medic that Geraint may have suffered an aneurysm – yet on his death certificate it states the child died of a brain tumour.

“For 27 years, I didn’t know why my baby had died,” said the busy mum.

After Carwyn’s shock death, she said: “I could not go through the rest of my life not knowing what killed another one.”

Carwyn was a driver for an industrial manufacturing firm with his older brother Gafyn, and was planning on proposing to his girlfriend of two years, Betty.

“He was a fit, 6ft 5in rugby player who had only ever been to the doctor for sinus problems or the odd dislocation with rugby,” said Carol, now a grandmother of eight.

On March 17, 2001, Betty was waiting at the family home to go for a meal with Carwyn after he had watched the game with friends at the local social club. When he was uncharacteristically late, Betty began walking to the club to look for him – and found him lying in the garden.

Carwyn, who his family say was not a big drinker, had walked part of the way home with a friend who had described him as “bouncing” with high spirits after a good day out – he had collapsed just outside the alleyway near his house.

His parents administered CPR but it was clear the “gentle giant” had died – the only explanation at A&E was that his heart had stopped.

A post-mortem examination failed to find a cause of death, but with memories of Geraint’s passing, Carol was not willing to accept the words “unascertainable cause” on his death certificate.

“A healthy 24-year-old just does not die for no reason,” said Carol. “I was told ‘your son’s dead, you’ve got to go home and get on with your life’.”

Carol spent nine months educating herself in genetics, where by day two she was “drained” but determined not to give up on her research.

After help from a genetics nurse at the University Hospital of Wales she was put in contact with a heart specialist in London, and within a month the whole family had been tested for Brugada syndrome at the Heart Hospital in London – Bill and their 39-year-old daughter Andrea were found to have the same condition.

Brugada syndrome is a condition that causes a disruption of the heart’s normal rhythm and can lead to an abnormality called ventricular arrhythmia, which if left untreated can cause fainting, seizures, breathing difficulties or sudden death.

In most cases, it is passed on by an affected parent, in this case Bill, and the condition is more common in men. But Gafyn has tested clear – as have the couple’s other daughters Terri, 43, and Julie, 40.

Andrea has now been fitted with a defibrillator to monitor her heart, but Bill, 67, decided against it because he was showing no symptoms and had undergone treatment for prostate cancer, which is now in remission.

Andrea’s own children tested clear, but when Carol found out the gene can skip a generation she had her remaining six grandchildren tested – they will now have to be tested every three years.

“It put years on my life again when the kids were tested,” she said.

“Now we’ve all just got to wait – I’m keeping my fingers crossed every time they go.”

While there is no evidence Geraint died of Brugada syndrome all those years ago, Carol says she will always wonder whether if he had it, and she had known, Carwyn may have been saved.

“Back then, they didn’t know it existed and the sad thing is you have to lose one to save another.

“What upsets me most is that if I hadn’t been so determined to look into Carwyn’s death, I could have been burying Andrea behind him.

“There was no reason for our family to be tested for Brugada before Carwyn died – as far as I knew, my family was completely normal.”

On February 27, Carol will be remembering what would have been Carwyn’s 32nd birthday and she says she continues to support cardiac charity Sads UK in memory of him. She said: “When I wasn’t well he was the only one to notice – he was so soft, a real gentle giant.”

“Sads UK does a lot of fundraising for machines in doctor surgeries that detect the condition. But it also needs a specialist to read the results.”

Carol, who said a test on Bill failed to show Brugada in 2004, added: “It’s been a help to know other people are there who understand. You don’t realise how many people have been through what we have – you think you are on your own but you’re not.”


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