Declan’s life still has value despite ‘locked-in syndrome’

Declan McMullan. Picture courtesy of McMullan family.
Declan McMullan. Picture courtesy of McMullan family.

The father of a young man heralded for his exceptional resolve in the face of a nightmarish disability known as locked-in syndrome has given his backing to a medical charity’s awards programme.

John McMullan describes his son Declan’s condition as akin to being ‘buried alive’. Trapped within his own mind thanks to a brain injury resulting from sudden cardiac arrest at the age of just 19, Declan can feel his body but is utterly paralysed. He cannot eat. He is blind. Almost entirely locked-in, Declan can hear and understand the world around him but cannot interact with it. His only means of communication is blinking his eyes.

Declan and John McMurray pictured at the British Heart Foundation's 'Heart Heroes' awards last year with Jayne Murray, Head of BHF NI, with Heart Hero awards winners.

Declan and John McMurray pictured at the British Heart Foundation's 'Heart Heroes' awards last year with Jayne Murray, Head of BHF NI, with Heart Hero awards winners.

However, Declan is possessed with a striking determination to show that, despite his disability, his life still has value. His brothers take him to the pub on Friday nights like most other young men in their 20s, where he drinks vodka through a pipe while his siblings enjoy pints of beer. A film student before his heart attack, Declan still enjoys trips to the cinema. He is keen to demonstrate he and others with profound disabilities can still lead a normal life if society is willing to adapt.

The Co Down man’s resolve and determination was recognised last year by the British Heart Foundation’s ‘Heart Hero’ awards. His father, John, has also been campaigning for greater disability rights and is encouraging people to give their backing to the charity’s awards programme.

Since Declan’s sudden cardiac arrest and subsequent disability, John has been forced to fight on a daily basis to secure the care his son deserves.

He told the News Letter about Declan’s life since tragedy struck on March 16, 2012.

“Declan had cardiac arrest five years ago and luckily we got him back but for the few minutes that he was ‘dead’, he suffered severe brain damage and was left with locked-in syndrome.

“Basically Declan, the best description for him now, is that he is buried alive.

“The award and the campaigning for disability rights gives him a sense of purpose. He could say, okay I’m never going to do all the things I want to do but I am going to help people. He can say I want to help society understand that as modern medicine is moving on and time is moving on and people that would have been written off a few years ago now have a chance, they have a life and they have rights.”

John admitted that his son sometimes struggles to cope, but contrasted that with his own experiences.

“There’s days Declan will spell out ‘I wish I wasn’t here’. I could be having a bad day and Declan will say, and remember this is all through blinking, he’ll say ‘Daddy, I’ll help you’. Despite his disability, he wants to help me. One of his carers could be complaining about having a runny nose, or having sore feet, and Declan will say ‘try being me’. I could be having a bad day at work and all I need to do is have a conversation with Declan. I only think I am having a bad day. He gives you that strength.”

Declan McMullan’s parents were advised to switch off his life support because doctors believed him - wrongly - to be in a vegetative state.

His father, John, explained what happened after Declan suffered a serious heart attack before being brought back from the brink of death.

John said: “He had taken instant cardiac arrest and died. Ten minutes before he was standing in the kitchen having a drink of water. That is how quick it happened.

“The fact that I knew CPR meant I could breathe for him and that preserved his brain. When the paramedics came to the house they shocked him 13 times and they got him back. They got the heart going again. “

He continued: “They got him to the hospital where they established it was a heart problem.

“When Declan was in hospital, they told us that he was brain-dead. They were encouraging us to turn the life-support machine off and we refused to do it.”

John added: “Even when he ‘woke-up’ so to speak, we weren’t aware of how bad things were. As time progressed - he spent a year and a half in the hospital - surgeons and consultants were coming around and they were sort of saying ‘this guy is in a vegetative state and that’s it’.

“It affected all the other support in the hospital - it sort of shut down because the top boys were saying no, it’s impossible. That filters right down - right down to the people putting you to bed. They were saying ‘what’s the point, he doesn’t understand’. But Declan did understand.

“He was lying there listening to everything. He was able to tell me all of this. He defied all the odds.”

The loving Dad added: “He has human rights. He will never walk again, he will never be normal again but he has a life.”

He continued: “You know your own kids. You know your own children. I thought I had to give my son a chance here. I said to my son ‘if you can hear me, we have to develop a way of communicating’. We could tell that he couldn’t see properly. They done tests on him and the problem wasn’t with his eyes, it was with his brain. But they knew he could hear so we developed this system of blinking and spelling out letters - like predictive text on your phone. All of a sudden we were able to communicate and he was able to tell the outside world ‘I am still in here’. At first the medical professionals said we were being irrational because they had looked at the x-rays and the scans and said it was impossible. They were saying there was no way it oculd be happening, but it was happening.”

John believes the health service in Northern Ireland is geared more towards treating problems than preventing them and explained that Declan’s underlying heart condition could have been detected.

“Right now we spend all our effort trying to treat the problems instead of trying to prevent them,” he said. Declan’s particular heart condition could have been detected. In women, it is often detected when they are pregnant and they get the scans and everything else but Declan didn’t get any of that.

“His disability could have been prevented. There are people walking around out there with the same underlying heart condition that Declan had and they are taking medication for it. Declan didn’t have that chance.”