This Father’s Day will be Jamie’s first without his son Deacon, nine, who tragically passed away on the way to school after suffering from a cardiac arrest – ‘I never thought that day would happen’
Nine brave men open up to 2wish Charity to talk about their bereavement
Little nine-year-old Deacon was on his way to school one Monday morning when tragedy struck.
His dad Jamie, a 43-year-old bus driver from the Rhondda, South Wales, was at work when he got a terrifying phone call to say that his son had gone into cardiac arrest.
The dad immediately left his bus in a panic and sprinted a mile to where his son was lying on the floor, in scenes he describes as ‘horrific’. Deacon’s mum and brother were with him in the car at the time, and Jamie was called by one of his older sons.
“I was at work and my son phoned me, but he never calls me, so I thought he either wants money or something is really wrong. He said to me, ‘Dad, something is really wrong with Deacon. ‘
“I was driving a bus at the time, so I stopped the bus where it was and literally ran. It was about a mile from where I stopped the bus, but I left everything, turned everything off and just ran.
“And then as I passed the corner into the street, that’s when he was in the middle of the road being worked on by the paramedics. It was a traumatic scene to come across. It was horrific.”
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Jamie and Deacon’s mum went to hospital with him, but he tragically passed away at 9.39am on that morning. “I never thought that day would happen”, the doting dad shared. “Once that milestone had passed, and they’re telling you that everything is OK, it kind of goes out of your head.
“It kind of makes it harder when he’s actually gone, because we saw him developing and doing well. So when it happened, it was a really big shock.”
Jamie had welcomed his son Deacon with his ex-wife on December 11, 2014. Before Deacon was born, the parents were devastatingly told during their 20-week scan that there were complications and were offered a termination, but they went against it.
Speaking to the Mirror ahead of Father’s Day, Jamie, a dad of five, shared: “When they said, ‘when it comes down to it, it’s better to terminate’, we decided to go ahead with the pregnancy. No matter how much time we had, it was still better than having an abortion. Even if it was just for a few minutes we’d have him for, that would be better, to see his face and to know him.”
They had further tests on their unborn baby, and a specialist told them that he wouldn’t make it through childbirth. But beating the odds, Deacon was born, weighing a healthy 6lb 6oz.
He was born with Pulmonary atresia with a VSD (ventricular septal defect) and MAPCAs (major aortopulmonary collateral arteries). Jamie said: “There’s not a very good life expectancy with the condition, and the percentage goes down every year. It’s a life-limiting condition.
“They offered us a chance at operations, but they wouldn’t prolong his life. So it was a case of there’s no point in putting him through that if nothing good is going to come from doing it, because we might have lost him in theatre.”
Deacon’s condition meant that he was “very short of breath quite a lot”, with his oxygen levels at around 60 per cent. He was also later diagnosed with Hirschsprung’s disease, a birth defect in which nerves are missing from parts of the intestine.
“He was quite blue sometimes, a very pale child. He couldn’t walk, but he shuffled around on his bum quite a lot,” Jamie said. “The school he went to, we actually had him in a standing frame and walking a few steps on his own, which was a big milestone for us, as we were told he would never do that.
“He couldn’t talk, but the school had him doing sign language so we could communicate. He also couldn’t eat, so he was fed through a tube down his nose until he had an operation, so he could be fed through a Percutaneous Endoscopic Gastrostomy (PEG) tube.”
The parents were told by specialists that their son didn’t have a long life expectancy and wouldn’t live beyond five years old. “Knowing that, it was definitely always there, but he used to have regular yearly checkups, and every year, he passed them with flying colours,” Jamie explained.
“Everything they doubted he could do, he actually ended up doing it in some way. And after he passed the five-year milestone, we were very optimistic that he’d live, not a full life, but a long life at least. There was no deterioration, he was improving, especially his oxygen levels, and he was putting on weight, but he didn’t make 10.”
This Father’s Day will mark Jamie’s first without his son, Deacon. He told us: “Father’s Day is always an important day because I have all my kids together, but everything kind of loses importance after a loss. I’m going to find it really hard, and it’s not going to be the same without Deacon.”
He adds that he has a special spot in Wales that he goes to every Sunday, when he can, with his children. Here, they take some time and think about Deacon.
Describing his son, Jamie said: “He was very cheeky, always smiling, he never cried – he was just always smiling.”
In a sweet reference, Jamie said his son would make noises similar to the children’s cartoon Pingu. “He would make these little noises every now and then, so you could always hear him, but now everything is so quiet.
“He had everyone wrapped around his finger, everybody knew him, and everyone gravitated towards him. He was also very tech savvy, multiple computers and tabs on the go, and the only person to bypass my face ID on my phone – he’s the only person I’ve ever seen do it.”
On coping with the grief of losing his son, Jamie sought help from 2wish, a charity that supports those affected by sudden death in young people. Jamie attends monthly coffee mornings and is the only male attendee, but encourages bereaved parents, especially dads, who may not be as forthcoming, to seek support.
Jamie is supporting 2wish men’s bereavement campaign. Visit 2wish.org.uk for more info.
