Your child has a progressive and possibly life-threatening condition, they need immediate surgery... we might see you in five years
IN THE five months since we last spoke, Gillian Sherratt’s eight-yearold son Harvey has been admitted to hospital four times with chronic breathing issues. Gillian is grateful that the stays this time were relatively short — the longest was four days.
It also gave them a chance to ‘push for an orthopaedic review’. Harvey, whose medical problems include spina bifida and scoliosis, has been waiting for complex spinal surgery to help straighten his back for several years.
His parents were told the operation was a ‘matter of life or death’ for their little boy because of the danger of his ribs crushing his lungs.
They don’t need reminding of how serious his condition is. They’ve watched helplessly as Harvey has struggled to catch his breath, while the curve in his back has grown to an 86-degree angle, well above the 50 degrees that is considered the ‘emergency’ benchmark.
But like many other young children waiting on spinal surgery in Ireland, promised dates for his life-saving operation have come and gone. The October review of his case, which his parents say they had to demand, determined that Harvey was not ‘fit for surgery’.
‘Between the last time Harvey was in hospital, in June 2022 and October 2023, he’d dropped 13.5kg,’ Gillian explains. ‘Despite being weighed numerous times and seen by dietetics, nothing was done until we pushed for that review in October. He just wasn’t getting enough calories.
‘He also had an issue with bone density because he had several femur fractures in a short space of time, so we were told that between those, his weight and his respiratory issues, he wasn’t suitable to go in for surgery.
‘I tried asking about what the targets would be in terms of lung capacity and things like that, for the surgery to go ahead. But I was told it doesn’t work like that.
‘When I asked how we’d know when he is well enough to face the surgery, like if his respiratory function is getting better or worse, it genuinely felt like they knew if they gave us a target it would put them on the clock.
‘So rather than give us a target, they said they’d review him. But when I asked who’d do it and when would it happen, there was no answer.’
GILLIAN and her husband Stephen Morrison say they are well used to not getting answers. Harvey, the eldest of their three children, is one of hundreds caught up in Ireland’s ongoing spinal surgery scandal. His parents have spoken out before, lots of times, and a distressing video they recorded of Harvey sitting in his wheelchair sucking in short, shallow breaths went viral when they posted it online in a desperate effort to illustrate their plight.
Last week, another video related to the spinal surgery waiting lists went viral when Senator Tom Clonan caused a temporary suspension of the Seanad by refusing to sit down after his speaking time had run out.
Senator Clonan, a longtime campaigner for children’s health rights, gave an impassioned speech about the condition of some youngsters still waiting for operations on their backs, one of whom he said has since become ‘paralysed’.
He lambasted Health Minister Stephen Donnelly for not being in the Seanad that day to answer any questions on the matter.
It later emerged, however, that Minister Donnelly was at a Oireachtas health meeting, scheduled for the same time.
In the meantime, this week the Department of Health announced that the result of an independent review into spinal surgeries at Temple Street Hospital has been delayed by several months, after it identified 17 more ‘cases of concern’. This HSE-commissioned review involves one particular surgeon, Dr Connor Green, regarded as one of the few, if not the only, medic in Ireland with experience of performing spinal surgeries on children with complex orthopaedic needs. It’s a convoluted story, one that caused huge outcry last September with the release of shocking details from reports into spina bifida patients operated on in Temple Street over a three-year period. In late 2022, serious concerns were raised at the Dublin hospital after poor outcomes for young patients. After demands from advocacy groups for full transparency, documents from the two reviews into 16 individual cases, one external and one internal, were finally released. It made for grim reading and included the death of 10-year-old Dollce-anna
Carter, from Trim in Co Meath, who had spina bifida and scoliosis, and who died in September 2022 after a series of operations at Temple Street.
They also showed a high level of postoperative complications, with more than 80 per cent of the 16 children needing further surgery and with one child going back into theatre an astonishing 33 times.
Perhaps most disquieting was the revelation that three of the children had unauthorised springs implanted during treatment.
Dr Green stopped performing spinal surgery in April 2023 and went on ‘voluntary leave’ from last September. Shortly afterwards, the HSE commissioned Selvadurai Nayagam, a consultant in orthopaedics and trauma at Royal Liverpool Children’s Hospital, to conduct a review into 19 ‘cases of concern’ involving surgeries done by Dr Green.
However, parent advocacy groups, like the Spina Bifida and Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network, are unhappy with the scope and terms of the investigation and have refused to engage with its work. Others have
claimed Dr Green is being made ‘a scapegoat’ for ongoing failings by Children’s Health Ireland (CHI), while another parent group, Orthokids Ireland, blasted the review as a ‘vendetta’.
Last week, Temple Street’s lead paediatric orthopaedic consultant surgeon, Prof Damian McCormack, called on management to immediately reinstate Dr Green, to help tackle the waiting lists.
‘These children are suffering and will continue to suffer unless Connor returns to work,’ he told them.
A few days later, while confirming that the Nayagam review is now delayed, a spokesperson for Minister Donnelly said he has asked CHI to set up a dedicated paediatric spinal surgery unit, to be led by David Moore, head of orthopaedics at Crumlin Children’s Hospital and Tallaght University Hospital.
Donnelly, according to the spokesperson, has also asked the HSE to appoint a full-time project lead to work on issues relating to children’s orthopaedic waiting lists, with the intention of setting up a new taskforce. This group will include patient representatives and doctors, and will be modelled on the approach used to resolve issues around the CervicalCheck screening programme.
FAMILIES of children waiting for surgery, however, have criticised the length of time it’s taken to get to this point, pointing out that a taskforce was called for last September.
‘The delay has led to a crisis situation where children’s lives are at stake,’ said Claire Cahill of Scoliosis Advocacy Network.
‘Hundreds of children lost valuable time. While the creation of a taskforce is a positive step, it must be statutory, independent of Children’s Health Ireland, and have power to direct. We will settle for nothing less.’
CHI, which oversees all three of the children’s hospitals, said this week it is ‘keenly aware’ of the impact of delayed surgeries and is doing all it can to reduce the waiting times.
‘Spinal surgeries are happening every week and making a profoundly positive impact on the lives of the children and young people who receive them,’ a spokesperson said.
According to its figures, by the end of last year, 464 spinal procedures were carried out — 216 spinal fusions and 248 spinal-other procedures. A total of 230 patients were still waiting for surgery, which is a 2.1 per cent reduction compared to December 2022.
The figures also show that last year the number of patients waiting longer than four months for spinal surgery reduced by 13 per cent compared to 2022. The number of patients waiting more than 12 months for a spinal fusion also fell, by 31 per cent. The number of patients waiting over 12 months for a spinal-other procedure remained the same.
Harvey Sherratt’s parents believe the plan they were told about years ago, to operate on the S-shaped curve in his spine, would radically improve, if not save, his life. ‘It would straighten out the spine and attach growing rods,’ Gillian explains. ‘So as he grows, he’d go back every six months to have them slightly lengthened. It would make a huge difference.
‘He’s constantly slumped to one side and it’s so uncomfortable. But more importantly it’s crushing his lungs and he’s losing lung function.’
Gillian was three months pregnant when they learned Harvey had spina bifida, which his dad Stephen described as a ‘complex disability, but for the most part — and you’ll see this in other countries — the kids can have a very good quality of life’.
Harvey, however, does have other medical issues apart from spina bifida. He’s completely paralysed from chest level down, has scoliosis and Horner Syndrome, which means he has different-sized pupils, he is autistic and asthmatic, and is allergic to a vast number of foods.
But despite all these challenges, his parents say that up until recent years, when his lung capacity began to be severely impacted, he was a happy, bubbly and engaged ‘little boy who knows his own mind and what he wants to do’.
After numerous delays, last March they finally thought his surgery was going ahead in April, but one week before he was due in theatre, they got a letter in the post to say his operation had been cancelled. There was no explanation why and they heard nothing in the following months.
Instead, they’ve had to watch as he’s become more listless and unwell.
‘The longer he’s left like this,’ says Gillian, ‘the worse his lung function will be and the more likely it will be a lifelong issue for Harvey.
‘Already the spark has gone out of his eyes — it feels like he’s just trying to get through his day. He’s not up for the same level of playing that he used to be.’
This week, both Gillian and
Stephen spoke about the possibility of moving abroad to get the medical help they believe Harvey needs. But their five-year-old daughter Lyla also has serious health issues — hypoplastic right heart syndrome, which means the right ventricle in her heart didn’t fully develop.
They also have a third child, 14month-old son Remy, which means moving away from supportive family and friends would be a massive wrench.
But talking to Gillian, it’s clear they’ve lost a lot of faith and trust in the Irish healthcare system.
‘Spinal surgeries for our cohort of children were halted 18 months ago,’ she says. ‘CHI still doesn’t have a plan for recommencement.’
AS FOR the announcement this week that the surgery review is delayed due to more ‘cases of concern’ being identified, Gillian says it simply ‘further points to serious issues and systemic failings within CHI’.
Indeed, she is dismissive of the entire ‘massively narrow’ investigation.
‘I don’t think the HSE should have anything to do with it,’ she says. ‘If they have any involvement, it’ll be skewed.
‘The independent reviewer [Nayagam] is still reporting to the HSE and I think they are directing what way they want it to go, they’re telling him where to look.’
She continues: ‘A surgeon never acts alone. Plenty of people within CHI were aware of whatever was going on, so why is it only coming to light now?
‘Don’t get me wrong, I still want Dr Green investigated. If my child had undergone surgery that was done incorrectly, I’d be absolutely furious if a surgeon was brought back without being investigated, it needs to be done.
‘But I don’t think they can really say they are leaving no stone unturned, as Stephen Donnelly says, when they’re only looking at spinal [surgeries] and they’re limiting [the investigation] to Temple Street and Cappagh Hospitals.’
She adds: ‘If Dr Green came back tomorrow while still under review, and it was put to me as an option, I would bring Harvey to his clinic.’
Perhaps her misgivings about our healthcare system are understandable.
‘Could you imagine going into hospital and being told, “right, your child has a progressive and possibly life-threatening condition, they need immediate surgery, but we might see you in five years?”’ she asks.
‘There’s no parent anywhere in the world who would think that was adequate care.
‘Yet that’s what we’re being told day in day out. But look, we won’t stop. We can’t.’
That’s the disgraceful dialogue Gillian Sherratt has been having with hospitals since her son Harvey was born – to the point she’d even allow a surgeon who’s under investigation to treat him