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'Priscilla is a miracle': A woman's near-fatal brain bleed and a family who fought the medical advice

Author
Emma Russell, NZ Herald,
Publish Date
Fri, 2 Sep 2022, 9:06am

'Priscilla is a miracle': A woman's near-fatal brain bleed and a family who fought the medical advice

Author
Emma Russell, NZ Herald,
Publish Date
Fri, 2 Sep 2022, 9:06am

A woman who suffered a brain aneurysm that left her unresponsive and hospital-bound for four months was never expected to recover - until she did.

Priscilla Jones was deemed by doctors at Hutt Valley Hospital too brain damaged to rehabilitate, and was advised she would need full-time care for the rest of her life.

Four years later, after her husband Brian sought legal help, she is back to her old self - walking, talking and even gardening and playing the piano like she used to.

Earlier this year, she got her driver's licence back and CT scans show her brain has fully recovered.

Te Whatu Ora (Health NZ) Capital, Coast and Hutt Valley's director of Provider Services Joy Farley said they were pleased Priscilla had recovered and said "decisions around patient care were made by dedicated and diligent clinical teams and experts".

Brian wanted to share his wife's remarkable story after the Herald yesterday reported on a unconscious young mum who was placed on Do Not Resuscitate (DNR), allegedly without consulting her family.

"You have to keep fighting the system ... I never gave up on Priscilla. I knew she could recover and she has. She's a miracle," he said.

Brian never gave up on his wife Priscilla and now she has fully recovered. Photo / Supplied

Brian never gave up on his wife Priscilla and now she has fully recovered. Photo / Supplied

In May 2018, Priscilla suffered a brain aneurysm and collapsed while gardening at their Lower Hutt home.

"There was no warning. One minute she's fit and healthy and the next she gets this headache and collapses. It was lucky I was there when it happened," Brian said.

He said she was taken to Wellington Hospital in a chopper and he was told she had a 50 per cent chance of survival.

At hospital, Brian said, doctors were able to stop the brain bleed but seven days later she had a vasospasm - which is when the brain blood vessels narrow and the blood flow is blocked.

Then later she had a pulmonary embolism - which is when a blood clot gets stuck in a lung artery.

"She couldn't speak, she couldn't eat, she couldn't move," Brian said.

Priscilla spent four months in hospital, one month unresponsive, after a brain aneurysm she wasn't expected to recover from. Photo / Supplied

Priscilla spent four months in hospital, one month unresponsive, after a brain aneurysm she wasn't expected to recover from. Photo / Supplied

She spent three months at Wellington Hospital - the first week in a coma and the remaining time with a tracheostomy helping her breathe - and then another month at Hutt Valley.

For just over a month she was unresponsive and then she was able to open her eyes, Brian said, but still she couldn't move or talk.

"The day after she got to Hutt Hospital they told me that she was too brain damaged to rehabilitate and that's when we had a fight and I won, I suppose," he said.

"We argued that there was still hope and we had the EPA (enduring power of attorney) at that stage so we had the upper hand."

Brian said the hospital eventually agreed to let her return home. She was considered a "high needs patient" as she had no movement and they used a hoist to lift her onto a bed.

"She was expected to stay like that forever," he said.

The hospital funded carers, a hoist and her wheelchair, but declined to provide rehabilitation care, Brian said.

He said he found some exercises online and started training her himself, with the help of some of the carers who would visit three times a day.

"The progress was very slow. There were tiny things that suggested to me that she was still there," he said.

Then, at the start of 2019, he made contact with personal trainer Monique Ballinger, who works with chronically ill patients and agreed to help.

"I remember Priscilla came in slumped over in a wheelchair dribbling and not even coherent. It was just horrible to see," Ballinger said.

Four years ago she was bound to a wheelchair and could only move her big toe. Photo / Supplied

Four years ago she was bound to a wheelchair and could only move her big toe. Photo / Supplied

"I turned to Priscilla, because my thing is even if she's not coherent I still want to know that I'm reaching her somehow, I said to her, 'do you trust us?' and she very, very gently raised her head, looked at me and whispered 'yes' ... I still get goosebumps now."

Ballinger said she used a power plate - which is a tool to help redirect the neurological pathways of the brain.

"When we started to work with her, the only thing she could move was her big toe ... and slowly but surely she started to wake up."

By the end of 2019, Ballinger said, Priscilla was able to stand and now "she's got her whole life back".

"I do believe in miracles and Priscilla is a miracle."

Brian said Priscilla could remember some of her time in hospital and was fully aware of what was happening.

"She found it incredibly frustrating because she knew everyone was saying but she couldn't respond."

Priscilla Jones walking after brain aneurysm that doctors deemed she would never recover from. Photo / Monique Ballinger

Priscilla Jones walking after brain aneurysm that doctors deemed she would never recover from. Photo / Monique Ballinger

In a statement provided to the Herald, Farley said "our clinicians utilise the Australasian protocol, which is evidence-based to the highest standard and carried out by specialists in the field for assessment of patients in similar situations in ICU," Farley said.

"Patient safety and wellbeing is our utmost priority, and our clinical staff and services strive to deliver quality care and positive outcomes for every patient."

Farely said she encouraged Priscilla and her whanau to contact them directly so that they could discuss and better understand the concerns they had.

"We are very pleased that this patient has recovered so well and is, in your words, back to their old self."

She said it would not be appropriate or responsible to comment "on this particular case at this time".

Senior Associate Holly Hedley - who specialises in health law - said unless a patient has appointed someone to be their Power of Attorney (POA) before they lose capacity, then by law no-one else, including family, were entitled to make decisions on their behalf.

"Of course they do have rights to be consulted and engaged and part of decisions, but it's balancing that with clinical best interest," Hedley said.

She said even Enduring Power of Attorney had restricted powers as they didn't have the right to refuse life-saving treatment or demand experimental treatments.

"There is always an underlying question of what's clinically appropriate or best interest," Hedley said.

She said if a POA had been appointed and the person had lost capacity then the family could apply to the Family Court to appoint a welfare guardian under the Protection of Personal Property Rights Act.

The welfare guardian could decide who looks after you, and what kind of medical treatment you should have.

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