‘Life-changing’ work gives Hannah hope

Hannah Gross suffered a massive head injury as a toddler. Now aged 41, as her condition deteriorates, work by Gisborne’s Mātai  Medical Research Institute is providing a deeper insight into her injury. Kiri Gillespie, of the Bay of Plenty Times, reports...

Hannah Gross asks her partner Owen Brighurst to get the tank.

She invites us to film what is coming next.

“You’ll get to see what it’s like,” she says.

Hannah’s body begins to stiffen. Her words slow down. She places wheat bags around her increasingly rigid body and reclines on a grey La-Z-Boy.

A waist-high cylinder of Entonox gas arrives from the bedroom. A hose fitted with a mouthpiece is attached. Hannah breathes deeply on the painkiller drug. Her hand clutches the La-Z-Boy and her legs begin to straighten and lift.

Hannah asks Owen to place her on the lounge floor. Her body is stretched out into a bridge position. Her left leg rises in the air, toes on both feet curl downward. At one point, she removes the mouthpiece and asks me to try to move her leg. I try, but there’s no way. It’s locked in. Her muscles are rock hard. She suggests I feel her torso — it feels like a bag of writhing snakes.

It’s not just Hannah’s limbs and torso that suffer involuntary contractions. Sometimes her throat and airways are affected, resulting in ambulance callouts. At times, she’s rendered immobile and speechless.

Hannah’s movements don’t appear obviously violent, but her breathing does. Her face grimaces in pain at some points and at others, she appears calm. These attacks are getting longer than the original three-to five-minute episodes she used to have.

This one lasts about 12 minutes.

For Hannah and Owen, these “sessions”, as they call them, are a daily occurrence.

The dystonia, a neurological movement disorder characterised by involuntary muscle contractions, is a legacy of a traumatic brain injury Hannah sustained as a toddler.

The Tauranga woman was barely 2 when, on the back of a bicycle ridden by her mother, her head hit a double-decker bus.

The front lobe area of Hannah’s brain was crushed.

Hannah and her mother, plus her father carrying Hannah’s sister, were out for a family bike ride in their homeland of the United Kingdom when the bike she was on skidded on loose gravel.

When Hannah was picked up by her father, brain matter fell to the road.

The trauma was so extreme, her father — a doctor — told her mother to pray the two-year old died quickly because the damage was so severe.

But Hannah survived. In fact, she thrived.

A scar now runs down the centre of her forehead — a visual reminder of that accident all those years ago.

Her damaged brain is coping as best it can but it’s taking its toll.

Earlier, as I walk through the door of her Welcome Bay home, Hannah greets me with a deep hug. I can feel her body trembling. I wonder if she is feeling emotional but I learn the tremor is constant.

It’s one of many symptoms she is now able to put down to the traumatic brain injury — 40 years later.

I’ve known Hannah and her family since we were teenagers. We grew up in Rotorua and while we weren’t close, we’ve kept in touch over the years.

She and her family have never shied away from the accident and Hannah’s peculiar “normality”.

From the La-Z-Boy, Hannah recalls the accident and what her father told her mother. “You don’t survive that much frontal lobe damage without losing something.”

Hannah’s late mother never got over the accident. She was so racked with guilt she never rode a bicycle again.

Eventually, the family moved to New Zealand, settling in Rotorua.

Looking back, Hannah says there were small signs the horror accident was having a lasting impact.

“I started singing before I started talking. Sometimes now, I can’t talk but I can sing. Although I haven’t been able to sing recently because of the muscle deterioration.”

Musical therapy helped during Hannah’s relatively happy childhood.

Then she turned 17.

“It wasn’t until I got glandular fever — that was the first point I was significantly sick. I was out for a whole year.”

She missed her seventh-form year. Afterwards, she moved to Auckland where she resat the year. She later studied acting and explored a career in photography, setting up her own photography lab.

Hannah worked hard for a normal life, saying she inherited a stubborn streak from both parents. Her father survived polio and never let its impact on his leg hold him back.

Eventually, though, Hannah was forced to give up her career aspirations when constant twitching meant she could no longer stay still enough to focus on taking photos.

Hannah says there have been occasions when she would meet someone and register that she knows them but was unable to recall how or why.

She calls these “Hannah brain moments”.

There are many more these days. Hannah’s health is deteriorating.

A piece of paper titled Problem Checklist, given to Hannah in 2020 by a former doctor, tables 33 ailments people who suffer a head injury typically experience. These include difficulties in movement, loss of senses, anxiety and increased headaches.

Hannah suffers from 27 of them.

No one could explain how she was able to survive such an injury to the brain and still function, she says.

“I was supposed to be dead. It’s supposed to have damaged all of these things in my brain. It must’ve done something, but as far as I could tell, I was completely normal.

“My brain does not fit the signs, I’ve always known this,” she says.

“There’s a whole lot of stuff I can do but I shouldn’t be able to do, which makes no freakin’ sense.”

Now, as a subject of research at Gisborne’s Mātai Medical Research Institute, Hannah finally has answers.

Scans of her brain done at Mātai depict Hannah’s damage in incredible detail.

The scans prove the extent of her injury and the impact it has on her daily life, she says.

“It’s amazing how much makes sense that didn’t make sense before.”

She describes Mātai as a “lifeline”.

With her father’s help and his knowledge of the New Zealand medical profession she became known to the Mātai team.

The institute is focused on enhancing medical imaging using new and advanced software and artificial intelligence and works internationally, with more than 30 global projects already under way.

Tears well in Hannah’s eyes as she explains how “life-changing” it is to have her suspicions finally confirmed.

“All of the diagnoses I had before, can now be combined to the fact there’s a missing part of my brain,” she says.

Hannah says it was the first time in a long while she believed she had been listened to by a doctor “where I felt I didn’t have to prove anything”.

“There was no doubt. No ‘you’re making this up’ or ‘You just want drugs’. There was none of that.

“It was just these incredibly passionate people.”

Looking at the bright pinks, blues, and greens of Hannah’s brain scan on his laptop screen, neuropsychiatrist Doctor Gil Newburn says, “I don’t think I have ever seen another quite like this”.

The image shows two gaping black holes where connections between her frontal lobes should be. In other scans showing the two halves of her brain, it’s clear her left hemisphere fails to reach its outer skull area as her right hemisphere does and should. A profile of her corpus callosum, which ensures both sides of the brain can communicate and send signals to each other, shows holes where it should be solid.

From his office on the fringe of Gisborne’s CBD, Newburn says the ailments affecting Hannah so significantly now are a direct result of her traumatic brain injury.

These scans of her brain prove it.

“There is a whole raft of secondary neuropathological cascades that get triggered by that original injuring event — inflammation, for example  — this can continue in the brain. It keeps on going and going and going, with evidence for this up to 20 years after the injuring event,” Newburn says.

In basic terms, people expect the initial impact on the brain or head to be the only injury but often secondary injuries, which can manifest much later, are “far, far more significant”.

“You can have your injury — you have your game of rugby or you fall off the jungle gym at school and what have you.You might feel a bit out of sorts or you weren’t sure what happened for a few seconds and you get up and get going.

“But you get up the next morning feeling nauseous and your brain is a bit foggy and the next day you feel a bit worse. People who don’t understand this say, ‘Well that must be psychologically based’, ‘that must be psychogenic because after all, you have your injury and you get better’.”

Newburn says too often people assume a person’s ailments are psychologically based, as in Hannah’s case, “but it’s not like that”.

“There is a very real lack of understanding about it.”

It’s hoped the work being done at the Mātai institute will help to combat this.

As part of its work to better understand brain injury, the Mātai institute uses a GE HealthCare 3-Tesla Signa Premier magnetic resonance imaging (MRI) scanner. The machine is considered an MRI machine on steroids. The cost of it is commercially sensitive but it is one of two in New Zealand. Another model, with older software, is based in Hamilton.

In 2019, the institute received $6million through the Kanoa Regional Economic Development and Investment Unit’s Provincial Growth Fund to buy the machine.

At the time, Regional Economic Minister Shane Jones said Mātai’s work would result in a better understanding of the brain, heart and body “with a focus on the fast-emerging field of traumatic brain injury”.

In October 2020, Mātai started operations. Now, through the machine, the team has insight into a person’s brain functionality, texture, size, and overall health. It can detect lesions, gaps, dead cells or other potential concerns.

Last year, Kanoa awarded Mātai a further $1.5m grant and a $1.5m loan through the Regional Strategic Partnership Fund to help co-fund the institute’s expansion. Mātai also runs a summer intern programme for 16 students over a 10-week period.

In addition to the work on brain injuries such as Hannah’s, the Mātai institute is carrying out research into the impacts of concussion by scanning the brains of Gisborne Boys’ High School’s first XV and fitting them with specialised mouthguards that measure the force of each impact. Research is also being done into the damage and healing of brains belonging to methamphetamine addicts in recovery.

Boys’ High principal Tom Cairns says Mātai staff contacted him when they were getting set up and there was a shared interest in looking at head injury and keeping students safe.

Mātai ‘one of the only rays of light’

“We saw it as having massive educational value as well as being able to contribute to something potentially global, especially from a Gisborne point of view.”

In addition to the scans and mouthguards, all rugby games are videoed to record impact events and each student goes through “a pretty thorough medical”, Cairns says.

“It minimises risk for our boys.

“It makes us think about how we train and . . . changing views around keeping people safe.”

Cairns says while the programme is optional, no one has not wanted to take part.

“It’s pretty cutting-edge research and it’s really good for our community to be leading in that.”

The 3-Tesla machine can also scan other parts of the body and Mātai is already working on a programme to better detect prostate cancer.

In Mātai’s work to better study and track the impacts of methamphetamine, the institute scans the brains and hearts of addicts and explores whether meth-inflicted damage can be reversible through abstinence from the drug.

Early signs indicate this may be so.

Tuta Ngarimu says he was “blown away” when Mātai approached him about the project.

“I could see the huge impact it could have. Not only through the research but when you are dealing with addiction, you really only rely on what the addict and their family say. It can be unreliable.”

Ngarimu helps run the community group Manaaki Moves Trust, which connects meth addicts and Mātai and supports them in their efforts to get clean.

Through Mātai, an addict commits to abstaining from meth, and scans of their brains and hearts are taken. More scans are taken in six weeks, and another six weeks after that.

The scans visibly show a reduction in damage, Ngarimu says.

“People go ‘wow’, especially long-time users coming in. I’m talking about those using for 30 years, each day,” Ngarimu says.

“One guy came in and he was in such poor shape, they just scanned him and the difference (between scans) was huge.

“If he didn’t come in to get that scan, he’d be six feet under now.”

Ngarimu says the scans provide addicts with tangible and relatable reasons to stay clean.

“There’s no guessing now.”

Ngarimu says he believes this work will “help people take that step forward towards recovery”.

“They’ve got something real now that they can see in front of them. For some people, it’s the push in the right direction.

“It’s exciting, you know?

“People say, ‘What the hell is that doing in Gisborne?’ I think Gisborne is just getting on to how grateful we should be to Mātai. They are just at the top of their game. These guys are at the top of the world.”

Back in his Gisborne office, Mātai doctor Gil Newburn says an advantage of being based in provincial New Zealand is community buy-in. If Mātai were based in a larger city, he suspects that while it would be easy enough to attract people at first, getting them to stay would be a challenge.

Retention was better because of Mātai’s location in Gisborne. People felt more invested in the work and the outcomes, Newburn says.

For Hannah, the work from Mātai has given her a better understanding of her health and confirmed what she has long suspected — her ailments are largely symptoms of her brain injury all those years ago.

Previous MRI scans have failed to show the scale of Hannah’s brain damage in such detail.

And of course, there are also the dystonia “sessions” that Newburn describes as like extreme writer’s cramp.

“It’s a muscle spasm as opposed to a dyskinetic movement, which is a sudden movement which you might see in Huntington’s disease.”

Newburn says it’s hard to know if Hannah’s glandular fever triggered an immune response in her brain that has basically not stopped since. Or whether she’s endured inflammation of the brain as a secondary injury from the accident that only manifested when her brain reached maturity. Or whether it’s a combination of both.

Both the glandular fever and her brain reaching maturity are believed to have happened about the same time, when Hannah was about 17.

“There are so many people injured at a young stage in their life, that you often don’t know what the consequences of injury are until you reach that point where the brain should have properly matured,” Newburn says.

“For a child who’s injured, particularly in the frontal system area, which is basically your organising, structure, planning, take-control-of-your-life in an organised, structured way ... you have problems.”

Asked how it’s possible Hannah has been able to function as well as she has despite the significance of her injury, Newburn says: “If she hadn’t had an injury, she would have been so bloody smart, she would’ve scared the pants off of all of us.”

On the lounge floor in Welcome Bay, Hannah is recovering. The Entonox has helped.

The laughing gas is a restricted drug that costs about $350 a tank. The couple film and time each session because they want to prove they are responsible with it.

No one is laughing.

The sessions are increasing in frequency and duration. It means Hannah hasn’t been able to work for years. Neither has Owen. His care

and support of her are 24/7. It makes income difficult.

Hannah’s accident is not covered by ACC because it didn’t happen in New Zealand. She gets by on an invalid’s benefit.

Owen, a former chef and bar owner, runs a spice business from home but spends much of his time caring for Hannah. He cannot be paid as a carer, though, because he is her partner.

Hannah sits herself up. She looks utterly spent.

Owen helps her into the La-Z-Boy again.

Neither knows what the future holds for Hannah. Nor does Newburn.

The Entonox treatment won’t last forever and its long-term side effects of vitamin B12 depletion, brain and nerve damage, and potential megaloblastic anaemia are not comforting.

Hannah spends about three hours a day stretching through yoga or pilates to help stave off the sessions. It doesn’t always work.

Through speech that has slowed and become less articulated, Hannah says despite her unclear future, she wants to share her story because it is one way she can help pay Mātai back for the answers it has given her.

Mātai is a non-profit entity that operates on the back of funding and grants.

“I don’t have a way to repay Mātai for what they’ve given me. I don’t have any way to do that. I want to help them keep doing what they are doing. It’s amazing.”

Hannah says her health has deteriorated substantially in recent years and she is often “unable to talk, unable to move”.

“Mātai has been one of the only rays of light.”

The institute has a national and global network and strong ties to Washington and Stanford universities, where Mātai’s founder Dr Samantha Holdsworth has already made breakthroughs in new MRI technology.

Hannah believes that by sharing her experience with Mātai, she in turn is hopefully helping others living with brain injury.

“If telling my story helps, then I’m willing.

“There’s groundbreaking world research happening there, not happening elsewhere in the world. I just want to see what they do next.”