"Locked in" syndrome: The fight to bring Catherine home

Catherine O'Leary with her son Brandon before she underwent life-saving brain surgery. Pic: Denis Minihane

AFTER six long years, Catherine O’Leary is edging closer to home.

Last Thursday in the High Court, the 37-year-old from Drom an Oir, Kilmoney, Carrigaline, in Co Cork, settled — via her father, Pat — an action for damages for €2.5m.

A former manager at the Subway outlet in Ballincollig and mother to Brandon, Catherine has been ‘locked in’ since she underwent brain surgery on the last day of Jan 2008 to remove a brain tumour.

The court heard that Catherine can communicate by blinking her eyes — once for yes, twice for no — but even that assertion seems open to debate.

Speaking on Friday, Pat said it was “inconclusive” whether Catherine was communicating: Come medics have apparently claimed she cannot, while staff at the Farranlea Nursing Home, where she has been resident for the past nine months, are convinced she can.

“We do not know for definite if one blink for yes is actually yes. It’s not all the time, you see.” Pat says they have asked Catherine directly what she wants for herself. “We have several times but we haven’t got much of a response.”

The hope must be that if she can’t communicate, then at some point she will.

'Locked in' syndrome: The fight to bring Catherine home

Catherine O’Leary at Cork University Hospital last year. Pic: Denis Minihane

According to Pat, who told the court that, even with his daughter in a nursing home, the family “do 70 hours a week” caring for her, the plan now is bring Catherine back to her parents’ home.

“Catherine has only been home for one night in the six years, about three months ago,” Pat says. “The HSE was paying for that. We wanted Catherine home and we had the hours built up with the HSE, but all that’s gone now.”

Catherine spent four and a half years in Cork University Hospital, where the surgery was carried out in 2008. Soon, Pat and his wife, Margaret, hope to have organised for Catherine to stay with them two days a week “to get used to it”.

“Farranlea are looking after her very well,” he says. “We are going to build up [the days] if everything goes well, even after the first month, we will go three days. We are trying to build up the nurses’ confidence in looking after Catherine with us.”

The family must decide whether or not to employ nurses from an agency or to hire them directly. Up to this point any costs have been met by the HSE, and costs were awarded in the High Court case, meaning the family did not have to pay legal fees. However, from now on, the €2.5m award — made without admission of liability — will be the piggy bank for Catherine’s care. As recently as Nov 8, the family had turned down an offer for that exact amount, but in court they heard the offer should be “grasped with both hands”.

“Naturally enough we refused it,” Pat says of the initial offer, “because we had already got prices on bringing her home from the nursing home and it came in at €519,000 per year, which works out at more than €9,000 a week — that’s astronomical.”

Pat says that Catherine’s life expectancy in 2008 was 15 years, but that later this was revised down to 10. Six years later, it means an expectation that she is expected to live for a further four years, but obviously, no-one can tell. These blunt calculations led to the figure of €2.5m.

Ms Justice Mary Irvine said it was “an absolute tragedy” and a very difficult case. The family was left to ponder the chances that they might lose. In the end, they accepted the settlement offer.

The strange thing is that it all started with a case of hiccoughs. Back at the end of 2005, Catherine couldn’t shake them off. They were persistent to the point of annoyance, and so she was referred to a clinic in CUH. According to Pat, “they kept putting it down to reflux in her stomach”. By Nov 2007, by which time Catherine had lost weight and been suffering serious headaches, she had had enough, returning to the clinic and demanding a brain scan.

That scan found a non-cancerous tumour on her brain stem, Pat says.

“We knew at the start, from what the neurologist said, it was going to be a difficult operation... Where the actual tumour was, it was on the brain stem. It was affecting all her organs, her eating, her movements — she would have been dead in three weeks otherwise.”

Catherine was 31, in the prime of her life, a young mother to an eight-year-old boy, living in Ballincollig with her partner.

Outwardly, her life was ticking along but her health was suffering.

“She was in a terrible state but she didn’t realise,” Pat recalls. Nevertheless, she kept working up to three weeks before the operation.

“She has unbelievable damage done to her brain,” says Pat. In addition to the surgery in CUH, he says there were subsequent complications caused when Catherine stopped breathing during a spell at a London rehabilitation clinic. The HSE has always denied any claims of negligence, or that action could have taken place sooner to diagnose the tumour.

It seems that Catherine’s movements, at 37, are limited to blinking and the odd smile. Pat says it has taken a toll on members of the family, not least her son, her partner, and her siblings.

“We have got through everything, all the crying,” he says.

“I had a heart attack three years ago and it was from stress. I got through it and you have to keep strong.

“There are more than us in that position. You can either keel over or you have to get on with it.”

The award will make “a huge difference for Catherine”, he says. “We think she enjoyed it at home, her heart rate was nice and relaxed. I suppose it’s nice to get a home environment.”

Staying at home is more expensive, however, than staying in a nursing home. As a ward of court, the money will be released almost in the form of a salary, going to pay the bills.

“If Catherine, which I hope she does, lives for the next 10 or 20 years we have to work out how best to look after her,” Pat says. They will now take “expert advice” as to how to proceed, and see how the visits go.

“We are hoping to have her back full time,” he says.

“We have always been by her side. We are not going to change now.”


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