The Neurological Foundation x Capsule
March is Brain Awareness Month and here at Capsule – along with the Neurological Foundation – we’ll be bringing you a selection of stories about how you can actively work to help prevent any premature powering down, plus what signs to look out for that things are amiss. Last week we brought you the story of a young NZer who is the third generation in his family to have Huntington’s Disease. Today we’re bringing you the story of a young Kiwi husband and father who seemed like a very unlikely candidate to suffer from a major neurological dysfunction – a stroke, something many of us assume happens to “old people”. Here’s how quick thinking and a relatively new procedure being led in New Zealand by the Neurological Foundation Chair of Clinical Neurology stopped this story from ending in tragedy…
It was a day that started like any other for the Pohio family.
Tessa was in bed in their home in West Auckland, while her fit and healthy 38-year-old husband Joel was up early. Work had been a bit busy and stressful of late, but they were coping.
It was then that things took a turn for the unexpected for the pair, who have four boys – their youngest being just seven-months, their oldest nine.
Tessa listened in as things began to sound anything but ordinary. She could hear Joel talking but something was drastically wrong – Joel’s words were very slurred.
Alarmed, she rushed from their bedroom to find Joel lying on the ground. He appeared to have completely lost his mobility – except for the use of one leg, which he was using to try and get up off the floor.
Through the panic, Tessa had some clarity – she’d seen the ads about FAST (Facial drooping, Arm weakness, Speech difficulties, Time) from the Stroke Foundation. “Ohmygod, you’re having a stroke!” Tessa remembers saying.
She quickly called 111, explained the situation to the dispatcher, and had paramedics on the way.
There, her anxiety rose further as the paramedics called ahead to Auckland City Hospital to inform them they were bringing a patient in with a severe stroke and to get the team ready. This was clearly a very serious situation.
“We were extremely lucky that we were taken straight to Auckland Hospital and not North Shore or Waitakere (given we are in the Waitemata District Health Board region) as it would have lost precious time given the quick onset of symptoms”.
A CT scan revealed a blood clot was stopping all blood flow to the brain and that he would need the clot retrieval procedure.
The team explained the procedure and were positive this would help save Joel; they administered the clot busting drug and wheeled him off to the operating room leaving Tessa to wait.
Then, the enormity of the situation really began to dawn on her. “Half an hour more, he wouldn’t have made it,” says Tessa. “I was surprised how quickly I spotted the slurring.”
Joel was wheeled out, and Tessa could see they weren’t out of the woods yet – he still had some slurring and mobility issues. A CT scan that evening showed there was still swelling on the brain, and it would need to be checked in the morning. Tessa was told of the worst case scenario – that if his brain continued to swell, he’d need another procedure, where a portion of his skull would be removed to relieve the pressure and swelling on his brain. But the team were feeling confident – Joel was young and healthy.
Thankfully, at this point, Tessa had a lot of support as Joel’s entire family were aware of what had happened and had made their way to the hospital – including his sister who flew in from Australia. She decided to stay with Joel overnight, which turned out to be a huge blessing as Joel continued to go downhill.
Joel had an adverse reaction to the clot busting drug administered upon arrival to the ED before the clot retrieval procedure, causing a bleed on his brain which in turn caused the swelling in his brain to increase and become life-threatening. By morning Joel had rapidly deteriorated substantially and Tessa, Joel and their family were now facing the worst-case scenario.
Tessa’s dad had picked her up to go across town to see her husband and she was stuck in peak hour when she got a call from the surgeon. Joel was being rushed back to the OR where the team would have to work fast to remove a piece of his skull in order to save his life.
“I didn’t even know if I could see Joel before the procedure,” remembers Tessa. “My father was driving, I jumped out of the car as soon as we arrived and raced up to the ward where Joel was. I made it in time, but I broke down at the sight of him, he looked like a vegetable, his arm was contorted and twisted and didn’t look like Joel at all. The entire scenario was terrifying.”
And so began the longest wait of Tessa’s life. When Joel was wheeled in at 9am the family was told it would take just an hour and a half to perform the surgery. But the seconds, minutes and hours ticked by agonisingly slow until finally – in the early afternoon they were advised he was in recovery.
“When they wheeled him past us and into the High Dependency Unit, there was sheer relief that he had made it, his body had been through a hell of a lot in two days,” says Tessa.
From there, Joel was able to begin his road to recovery. He remained in hospital for two months in the Rehabilitation Unit and lost 1/3rd of the right side of his brain – permanently affecting the left side of his body and vision. He continues to suffer from seizures.
But Tessa and the family are just so relieved to still have Joel in their lives.
“Without the clot retrieval process and craniectomy, it could have been a very different story,” says Tessa.
And, unbeknownst to them at the time, the clot retrieval was actually a relatively new procedure that Professor Alan Barber, Neurological Foundation Chair of Clinical Neurology – who was at Auckland Hospital that day – and his team have been perfecting for the last twelve years. It’s currently only carried out in Auckland, Wellington and Christchurch, but patients can be transferred by the emergency chopper, as it is a race against time – the clot retrieval process only has a relatively small time window in which it can be performed.
Thanks to Tessa spotting the signs of the stroke quickly, and the paramedics getting Joel straight to Auckland Hospital – he was a perfect candidate for the procedure, which has now been used to save the lives of many New Zealanders.
Clot retrieval (technically called Thrombectomy) is now used in about 10% of stroke cases in New Zealand and about a third of people do better than if they hadn’t had the drug. A few times a year, Professor Barber says he sees a miraculous response.
“Thrombectomy used to be science fiction. Now we are routinely going in and pulling out clots. One in every five people who receive the treatment will return home as healthy as they were before the stroke occurred.”
To increase the effectiveness of rehabilitation following stroke, movement scientist Professor Cathy Stinear joined Professor Barber and they have built a team linked to the clinical team on the stroke unit.
Professor Stinear and her team developed two algorithms – one for predicting hand and arm function after stroke which is used to develop personalised rehabilitation programmes for each patient to optimise their recovery. It’s now routine care at Auckland Hospital and several other DHBs around the country. Meanwhile the TWIST algorithm predicts whether and when a patient will be able to walk unaided following stroke and is being tested at Auckland, North Shore and Waitakere hospitals.
In parallel with his team’s work on treatment and rehabilitation, Professor Barber led the Neurological Foundation-funded Auckland Transient Ischaemic Attack Study (TIA), one of the largest studies of its kind in the world. The study’s results are helping with New Zealand’s health policy planning and development.
Professor Barber says that none of this would have been possible without the ongoing support of the Neurological Foundation, which in 2019 committed $2.2 million to not only fund the Chair of Clinical Neurology role for another five years, but also to take on a new research fellow. This provides support to the Professor Barber, as well as begins the training of the next generation of neurologists and neuroscientists.
Still, it continues to shock Tessa and Joel – and their family and friends – that someone so young, fit and healthy could have a stroke. Which is why they’re keen to tell their story, in the hope of getting the messages out there early – what to look out for, and to move swiftly if you spot the signs.
“We want to bring awareness about stroke,” says Tessa. “it is the second biggest killer in New Zealand and it doesn’t discriminate – it can happen anywhere, at any time, to anyone.”
Research is the only hope.
This year marks the Neurological Foundation’s 50th anniversary. Over the last five decades they have funded over $50 million in research and education to give hope for a better future to the 1 in 5 Kiwis affected by a neurological condition. This has only been possible through donations from everyday people like you.
You can make a difference to someone’s future today by donating to the advancement of neurological research.
A lot has changed in the last 50 years, but one thing remains, the need to know more about the human brain. It is only through research that we can accomplish this, and we need your help. So why not help make a difference and show your support by donating at brains.org.nz