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ABC News
ABC News
Health
By Janelle Miles 

How Christian McDonald survived locked-in syndrome, which left him trapped inside his body in ICU

Christian McDonald in a locked-in state in Cairns Hospital ICU and his wife Tamara. (Supplied)

It was like being buried alive at the beach with only a straw sticking out of the sand to breathe through.

That's how 48-year-old Christian McDonald remembers spending weeks in hospital completely paralysed, unable to breathe on his own.

He was conscious but could not speak nor communicate in any way, not even to open an eyelid nor raise an eyebrow to connect with the health workers caring for him.

But over time, lying on a bed inside Cairns Hospital's intensive care ward (ICU) with a ventilator breathing for him, he learned to differentiate one nurse from another — and one doctor from the next — by their voices. And the distinctive sound of their footsteps as they walked into and out of the room.

The father of five had developed what is known medically as "locked-in syndrome" or Guillain-Barre Syndrome, a rare neurological condition with various causes.

More than two years on, Mr McDonald is walking again although not like he used to. (ABC News: Kristy Sexton-McGrath)

In his case, doctors diagnosed severe Guillain-Barre Syndrome, an auto-immune disease where the immune system attacks the nerves.

'Beyond a nightmare'

Essentially, after a prolonged period of severe work stress, Mr McDonald's body turned on itself, causing gradual full-body paralysis.

For 31 days, he was completely locked in, his mind trapped inside his body, severed from the outside world.

The experience was so frightening Mr McDonald described it as "beyond a nightmare".

He tells of frequent bouts of breathlessness despite being on a ventilator, his locked-in state making it impossible for him to alert his medical team to have the machine turned up.

"You're constantly just counting your breaths all the time, trying to keep on top of your anxiety — you do a lot of praying."

Mr McDonald first sensed something was not quite right after a day out jet skiing with his sons at Lake Tinaroo, near their Atherton Tablelands home, in late January 2020.

Mr McDonald first sensed something was not quite right after a day out jet skiing with his sons at Lake Tinaroo. (Supplied)

He struggled to help his boys haul the jet skis back onto the trailer.

That night, as he sat on the couch at home, he realised something was seriously wrong.

"I felt really off — I was losing a lot more strength at that stage and starting to struggle lifting my arms," he recalled.

"I said to my wife: 'I need to go to the emergency department to find out what's going on.'"

Physio sessions felt like muscles being 'torn off the bone'

It would be months before Mr McDonald was well enough to return home and more than a year before he was back on his feet, taking a few tentative steps again.

He spent much of 2020 in Cairns Hospital's ICU, most of that time on a ventilator.

Mr McDonald was conscious in ICU but could not speak or communicate in any way. (Supplied)

But it was his weeks of being locked-in, unable to even grimace to indicate when he was in pain, that took the biggest toll psychologically.

Routine physiotherapy sessions to stretch his legs could be so excruciating painful, it felt like his muscles were being "torn off the bone".

"Some of the painful experiences I had in hospital — I'd never known anything like it," Mr McDonald said.

Unable to open his eyes, Mr McDonald could not orient himself to his surroundings, sometimes feeling as if "I was sitting on my head", his mind playing tricks.

"I'd never know what was up or down," he said.

"They'd move me every few hours. I knew they'd rolled me, but half the time it felt like they'd rolled me through the bed and the next minute, I was up on the roof and the next time I was sitting on my head — it was so disorientating."

'Still pretty raw'

His only reassuring tethers to the real world were the calming voices of his wife of 24 years, Tamara, other members of his family and hospital workers talking to him as he lay in bed, unable to respond, like a living mannequin.

Apart from relaying her conversations with his doctors, Ms McDonald — herself a nurse — said she would often speak to him about the weather and what was happening in the world, including COVID-19, which was only just emerging when he was admitted to hospital.

"We told him about the toilet paper issues," she said, with a laugh.

"When he could talk, he just couldn't believe that people were having fights in the supermarket over toilet paper."

Mr McDonald's said hearing family and hospital workers talk to him was reassuring. (Supplied)

Ms McDonald, who wrote a daily diary during her husband's illness, joked that she sometimes found it convenient that "I could talk to him and he couldn't say anything back".

But as her laugh faded, she added in a sombre voice: "Most of the time, it was terrible. My favourite word when people would ask me: 'How are you going?' was to say: 'Coping.'"

Mundane conversations became therapeutic

Seemingly mundane, one-sided conversations with hospital staff became therapeutic for Mr McDonald as he lay motionless in bed.

"There was one doctor who used to come past when he started work every morning," he said.

"He'd give me a news report. He'd just say: 'Half the world's going stupid'.

"Even when he wasn't looking after me he'd still drop in and just say hello."

Christian McDonald returns to Cairns Hospital for check ups more than two years after Guillain-Barre Syndrome took hold. (ABC News: Kristy Sexton-McGrath)

Mr McDonald said there was a nurse "who used to walk past and have a quick chat as well".

"She'd just tell me what was going on in her life and what was going on with her family," Mr McDonald said.

"Then off she'd go again. They made the point to stop in whenever they could."

'I chose to be here'

He said he could not speak highly enough about the staff.

"It's not a job for them, it's a passion," Mr McDonald said.

"They were just so concerned and so caring — it just blew me away," he said.

"It made it actually a lot easier — being able to communicate with me from the caring side made a huge difference to trying to cope — it helped me to deal with it all.

Christian McDonald with his wife of 24 years, Tamara. (Supplied)

Mr McDonald's belief in a higher power also guided him through the toughest of days.

While not a devout churchgoer, he credited his faith in God with keeping him focused on hope at a time when many would have given up.

"I do strongly believe throughout the whole entire time, I had the option whether I wanted to be here or not," he said.

"I chose to be here — the power of positive thinking to me is extremely important. There's a lot that's in your control."

Communication via slight eye movement

After almost five weeks of being completely locked in, a highly observant nurse noticed Mr McDonald had regained slight movement in his left eye.

It was no more than a slight flicker to the left, but it was enough to enable the nurse to hold his eyelid open while she read out letters on an alphabet board, allowing him to select letters using a sideways movement of his eye.

His first message after so long of not being able to communicate was practical rather than profound: "bowels full".

From there, he slowly regained muscle function, finally going home in a wheelchair after spending most of 2020 in hospital.

More than two years on, Mr McDonald was walking again although "not anything like I used to".

'It would have been awful'

Cairns Hospital's ICU director Drew Wenck said the ICU treated about two cases of Guillain-Barre syndrome a year but rarely as severe as Mr McDonald.

"They might not be able to breathe but they can usually move their arms a bit, or their legs a bit, or they can move their mouth.

"They can often mouth words, they can lip-read and things like that.

"It's very unusual to be that severe to not being able to communicate.

"Usually there's some finger movement or some head movement or something like that, whereas in Christian's case, the paralysis was extremely profound — it would have been awful for the poor man."

Dr Drew Wenck says the ICU treats about two cases of Guillain-Barre syndrome a year but rarely as severe as Mr McDonald. (Supplied)

While Mr McDonald said he believed the Guillain-Barre syndrome was triggered by extreme stress in his case, Dr Wenck said the Cairns Hospital medical team had been unable to identify a cause.

Dr Wenck said bacterial infections such as campylobacter, or viruses, including influenza, had been linked to the condition.

"What initiates it, what causes it, what turns it on and turns it off, are still areas that are subject to research," Dr Wenck said.

Mr McDonald's ability to articulate his recollection of the locked-in experience to his ICU team after he emerged from the paralysis resulted in his case being reported recently in the prestigious British Medical Journal.

"It helps the world understand these patients and how we should treat them," Dr Wenck said.

Family also grieving son's death

In January this year, almost two years after he was diagnosed with Guillain-Barre syndrome, Mr McDonald lost his 20-year-old son Luke, who drowned after he hit his head at Emerald Creek Falls, on the Atherton Tablelands.

Christian McDonald's children Sarah, James, Luke, Amy and Timothy. Luke, 20, died in January this year. (Supplied: Christian McDonald)

The grieving dad said his locked-in experience was helping him cope with his son's death.

"We still miss him like crazy — we talk about him all the time, but we've come to terms with it as much as you can," Mr McDonald said.

As he deals with the family's tragedy, consulting a psychologist this year to talk through the impact of the past two years, Mr McDonald remains grateful for life's simple pleasures — enjoying the wonder of the sunrise or watching a tree move in the wind.

Every so often, he returns to the Cairns Hospital ICU to the people who helped him through one of the most difficult times of his life.

"When we go in there, it's like going back to see family," Mr McDonald said.

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