Noah lay in a coma for nine days in hospital. Photo: Supplied
The family of a non-verbal autistic child are struggling to access support after their son suffered a medical injury in hospital that has left him unable to walk.
TeRina Waikawa and Roman Roberts have been in limbo for 18 months and worry that autistic children can easily fall through the cracks because they can be difficult for doctors and nurses to deal with.
Their son Noah Waikawa Roberts was diagnosed with non-verbal autism when he was 2-years-old. TeRina left her job in IT and dedicated herself to caring for him full time.
Noah Roberts suffered a medical injury in hospital that's left him unable to walk. Photo: Supplied
"It honestly hasn't been easy. He's non-verbal and has a lot of sensory issues which we've worked hard at for many years, he has a lot of behavioural problems and a lot of meltdowns," she said.
But Noah, who has just turned 11, had been making huge progress and was back at school part-time in 2023 as his daily meltdowns receded to only a couple times a week.
But in September 2023 he fell ill with influenza B and was taken to Hawke's Bay hospital in an ambulance.
His skin was blotchy and his temperature high, and TeRina told RNZ the nurses and doctors suspected he had sepsis, but she felt they were not taking action fast enough.
"I don't think we were heard. My biggest concern that night was that Noah's head was hot and sweaty but his whole body.. can't even explain it... but he felt dead cold," she said.
Noah in hospital. Photo: Supplied
He was transferred to the children's ward, where the family say his condition went downhill and despite ticking all the boxes on the 'paediatric vital signs chart' that should have triggered a 'paediatric emergency', that did not happen.
"They should have called a paediatric emergency. If they'd done that... we could have fully avoided this whole health journey. It blows my mind that you have this chart and you're not even following your own pathways," said TeRina.
She sat with Noah all night as he struggled to breathe and a different doctor checked Noah in the morning and escalated the situation. He was flown to Starship Hospital, where he lay in a coma for nine days - suffering a seizure and blood clots in his legs. When Noah woke up, he could not walk.
"At the end of day all I want is for my son be able to walk again. I don't know how long this will take... way longer than we thought it would, but if he's not going to receive any help then I can imagine him staying like this," she said.
His family are living with daily challenges - such as renting a property with no wheelchair-accessible shower, so Noah has to bathe at the local pools or under a garden hose.
"It's the reason why he has ongoing skin conditions, I can't keep it under control because I can't keep him properly clean," she worried.
Transporting him is also hard as he is in a wheelchair and the family can not afford a suitable vehicle, so Noah has to sit in the front, which his dad Roman said can be dangerous.
"If he has a meltdown we have to pull over because he's sitting in the front and can pull the wheel or pull the handbrake.
"He's done it quite a few times with TeRina so I do the driving because I'm strong enough to hold his arms away from causing an accident," he said.
Health NZ: 'We're very sorry'
Te Whatu Ora investigated Noah's case and found there was a delay at Hawke's Bay Hospital in recognising his deteriorating condition because the paediatric junior doctor did not examine Noah in person due to his distressed state, and neither did the consultant paediatrician.
Noah in hospital Photo: Supplied
Health NZ group director of operations for Hawke's Bay Hospital David Warrington told RNZ they are apologetic for what happened.
"We are very sorry for Noah and his family's experience on our children's ward in 2023. We recognise that it is much harder for young, nonverbal children with autism to communicate their distress, and therefore how important it is to listen to those who know them best, their families.
"In addition, we acknowledge the additional challenges faced when providing rehabilitation to children with neurodevelopmental conditions, such as autism," he said.
Warrington said Health New Zealand has recognised the vital role families play in the care of their loved ones by introducing the Kōrero Mai service nationwide across hospitals and wards - including children's wards - to help families express any concerns they have about care and wellbeing.
"Regarding his initial presentation, we have learned from what didn't go right with Noah's care and have improved the way we communicate with families to reduce the chance of similar events in future."
He said Noah continued to have regular home visits from Health NZ specialist nurses, a Child Development Service occupational therapist supported Noah's mobility and equipment needs, and a social worker was supporting the family.
"We remain committed to working with our partner health agencies to support Noah and his family, through his period of rehabilitation and ongoing care," he said.
But Noah's family told RNZ the whole situation had been a nightmare with poor communication and limited access to support and resources from many parts of the health sector.
"I just feel we have done everything right and we've been let down massively from every corner...The prolonged waits, the actual healthcare Noah received, and just empty promises," said TeRina.
(from left) Manaia and Noah Waikawa-Roberts, TeRina Waikawa and Roman Roberts. Photo: Supplied
'He's slipped through the gaps'
Noah's occupational therapist, who did not want to be named, told RNZ that since the injury Noah is yet to receive rehabilitation from ACC or Child Development Services.
She worried the delays were because he was a non-verbal autistic child.
"It took year for ACC to pick up his case and then to do the review of what his entitlements were and what his rehab package plan was - took another six months.. but in that 18 months he hasn't received.. he's slipped through the gaps," she said.
She wanted to see healthcare workers take a better approach with neurodiverse patients, and listen to their parents more.
Noah in hospital. Photo: Supplied
"I've been involved with several other children with autism and supported them in health settings where we've made it fun or different - approaching it in a completely different way, taking into account those children's unique needs or interests.
"Can we look at how the child presents and how their needs can be met because they are all different," she said.
ACC deputy chief executive service delivery Michael Frampton said they were providing support for Noah's injury.
"I'm very sorry to hear of Noah's injury and how difficult the last few months have been for him and his family.
"Noah's case is complex because he has extensive, pre-existing needs unrelated to his injury. He has a life-long disability, and he is receiving support from the health system," said ACC.
It said since October 2024, Noah has had cover for a treatment injury which caused leg pain and reduced mobility.
"We are putting in place an extensive, six-month rehabilitation programme which aims to return Noah to his pre-injury mobility. The programme involves school and community therapists to ensure there is a collaborative effort for Noah," he said.
But TeRina said once he was approved in October, she was told by the case manager that they couldn't approve anything because ACC needed more medical information. So Noah's family spent another six months in limbo without any physio from ACC.
Now that ACC has finally made the decision, he will soon undergo the six-month rehab programme. However, at the end of those six months ACC said it will review his progress and see if he has further rehabilitation or treatment needs.
"We know that rehabilitation is a process that takes time for some clients, and even more so with Noah's complex needs. Noah has a dedicated case manager who is working closely with his parents to help them with his injury-related needs," said ACC.
While the family was grateful for ACC's support, TeRina said it was important they understand that it was the injury from his time in Hawke's Bay Hospital that had put him in the wheelchair, as before that he was very active.
"He was a runner, he'd escape through doors.. there is no way anything would keep my son down," she said.
ACC told RNZ it will also provide support such as additional care, additional education, Occupational Therapist support, Rongoā Māori, psychological support, paediatric review, and reimbursement for his wheelchair ramp and consumables such as nappies.
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