‘Fun-loving boy’ no longer speaks
Tadhg loved rugby, sang in a choir and was the captain of his school’s kapa haka team. But since September, the 10-year-old has been a “completely different boy” after a 70-minute seizure brought on by influenza A. Reporter Jaime Lyth spoke with the parents about what they think is a “gap” in New Zealand’s health system.
“We cannot realistically do this on our own,” mother Laura Devine-Giles says.
Christchurch parents Laura Devine-Giles and Greg Giles have two children, 10-year-old Tadhg and 2-year-old Teagan.
But since Tadhg’s brain injury, the two formerly close siblings are living separately and have barely been in the same room together because it’s no longer safe.
He has gone from a confident boy writing speeches about rugby, to nonverbal and agitated, Devine-Giles says, with bruises on her body to prove it.
Tadhg caught viral encephalitis from influenza A last year, and disaster struck in September when Tadhg had a 70-minute seizure, aspirated and was put on a ventilator.
He was rushed to ICU and then the children’s ward at Christchurch Hospital, and was transferred to Auckland in November.
“Though he has come some way and we are so grateful every day that he’s still with us, so much has changed.
“Our clever, chatty, silly, singing and fun-loving boy no longer speaks and is cognitively impaired.”
His brain injury has left him with memory loss, psychosis, catatonic episodes and altered mental status, his parents said. “He is now so cognitively impaired he doesn’t comprehend very much.”
His personality has changed, he gets startled by certain noises and drops to the floor. He picks up any object in sight so any space needs to be cleared.
“He doesn’t sit still, constantly feeling out in his environment, wandering around aimless, in his own head, in circles around the room but checking in with us as he passes.”
He needs assistance with all activities of daily living including toileting and eating. He has no safety awareness, hurting himself and others often. “Tadhg needs constant supervision and support.
“He is like a toddler in many ways but can pull heavy furniture and items around.”
Since being in Auckland, Tadhg has had no outings nor has he otherwise left the children’s rehabilitation facility at the Wilson Centre in Takapuna other than to go to Starship in an ambulance.
Starship children’s hospital has advised that Tadhg is not acute, and the hospital environment is not suitable to keep him.
Greg and Laura are in parent accommodation at the Wilson Centre, while Teagan is cared for by nannies at a rental home throughout the day.
But, three weeks into what they thought would be a three-month stay, the family were told that the centre was not the right fit, Tadhg was not yet cognitive for rehabilitation, and he was a safety risk.
The centre sought to discharge him, but Devine-Giles said, “eventually, they had to take us back because we had nowhere to go”.
“Because this is an acquired brain injury [from illness], there’s no support from ACC.
“We are in a horrendous situation with a gap in the New Zealand medical system to support our child,” Devine-Giles said.
Greg has had to return to work remotely so the family can continue paying their mortgage in Christchurch, rent in Auckland, and cover carers for Teagan and Tadhg.
“We are at a loss as to what to do and what steps to take next. We’ve got nowhere to go.”
The family is desperately reviewing options for what private care they can get for their boy or a purpose-built home that will keep their children safe.
Moving back home would require sedation for Tadhg and an emergency medical flight.
Then the family would have to completely modify and redesign their home, which they cannot afford.
“If we do go back to Christchurch, there’s no facility, we have to take him home to an environment we will find unliveable, and our daughter’s safety is a massive issue.”
Tadhg is on risperidone, lorazepam, epilim, fluoxetine, olanzapine, melatonin to sleep and pamol throughout the day to help with migraines.
“There is progress but at the moment it’s mostly movement-related progress, cognition may return but how much we don’t know.
“We are told there is no certainty of a full recovery. We are trying to remain hopeful but we know the journey ahead is a long one, likely years.”
The family has a Givealittle page for people who can offer support.
A Te Whatu Ora spokesperson said a neurological brain injury can be unpredictable and complex, and the care and support required is unique to each child.
“For children with particularly rare and complex neurological issues, a range of services and multidisciplinary clinical teams work closely with wha¯nau to find the best available care option for their child.
“Because of the nature of cases like this, it can take time to plan for the right environment or support required to provide a safe, clinically appropriate level of care.”
The spokesperson said they have been keeping the family updated with potential next steps for their child’s ongoing care.
They said Starship provides hospital care to seriously ill and injured children, rather than long-term rehabilitation or residential care.
The Wilson Centre provides intensive rehabilitation services for children from 0-16 years of age, including those with acquired neurological injuries who can participate in a rehabilitation programme.
“Children with acquired brain injuries are otherwise supported by their local hospital and disability support services nationally.”
Brain Injury NZ spokeswoman Cathy Matthews said when someone doesn’t meet the standards for ACC funding they will be supported under the Ministry of Disability.
Matthews said an assessment would be done to understand what support and funding Tadhg’s family needs.
“What is available is limited, and that’s not just for brain injury.
“Yes there is a shortage of respite facilities in the country, and not all regions are well covered for providing residential support for people with brain injuries, even more so when you get down to children.”
Matthews said if he doesn’t suit the Wilson facility, the staff have a duty of care to find him suitable accommodation. “To discharge him home with that sort of behavioural stuff is unsafe.”
Because this is an acquired brain injury [from illness], there’s no [ACC] support. Laura Devine-Giles