Harvey Morrison's parents speak out after the death of their son

Times

19 hours ago

Even before he was born into the world, Harvey Morrison was fighting for his life. His parents Gillian and Stephen were told during her first scans that their unborn son had spina bifida and would probably not survive birth.
'The hospital kept mentioning termination. They kept saying, 'You're only young, it's your first child, you can go again. This will be a burden on you for the rest of your life.' Harvey was anything but a burden,' Gillian said.
When she had her 36-week scan, it was suggested it might be best if they made the baby comfortable and let him pass when he was born as he might not survive. Gillian made her way home distraught. 'I felt under pressure to give up on him before he was even born.'
That night she and Stephen promised to do whatever it took to help their son. 'We went back in and told them to do everything medically possible to keep him alive,' Stephen said. 'He changed us as human beings. He shaped us morally. He just changed who we were.'
The Morrisons are grieving the loss of their eldest son, whose unexpected death on July 29 has provoked public outrage. For years, they had fought in vain to secure better services, healthcare and surgery for Harvey's scoliosis. #Justiceforharvey has been trending all week.
The boy's death has led to opposition calls for the tanaiste Simon Harris to resign, after he failed to organise a promised meeting about the boy's condition when he was taoiseach. Here, Harvey's parents tell the full story of what happened for the first time.
Gillian was 23 when she became pregnant with Harvey. At the time she was planning a career in childcare. 'I actually wanted to work with children with additional needs,' she said. 'When I was told about Harvey, it just felt so fitting.'
Harvey was born on January 15, 2016, by planned caesarean section. The Morrisons soon adjusted to life as full-time carers, with Gillian receiving an allowance and some support services. Then Harvey began to fail. He would scream and vomit repeatedly. Gillian suspected allergies and she says her concerns were dismissed. The family's real struggle began when Harvey's scoliosis worsened. He had been born with a Z-shaped spine. 'That's what they said he looked like in the scan,' Gillian said. 'I didn't really know much about scoliosis then.' Medics told the Morrisons that controlling Harvey's spinal curve was literally a matter of life or death — but operating on someone so young carried serious risks.
'Harvey was too ill to operate on. So we watched and waited to see how it would progress. But it seemed to get worse very quickly,' Gillian said. They discussed a traction system attached to his wheelchair — a method normally used for short periods before surgery to correct posture. In Harvey's case it would have meant eight or nine years of continuous use, robbing him of any quality of life and requiring full-time nursing.
The prognosis darkened when Harvey's Chiari malformation, a condition in which part of the brain is pulled down towards the spinal column, worsened. 'They weren't sure whether the scoliosis was driving the Chiari, or the Chiari was driving the scoliosis,' Stephen said. Doctors decided on surgery to correct the Chiari through decompression.
The operation, carried out when Harvey was just two and a half, stalled the scoliosis for a time, but complications arose. 'It actually had a massive impact on his quality of life,' Stephen said.
Harvey was a survivor. Though he could not speak, his emotions were plain in his eyes and expressions. He fought off every cold, flu and virus going. 'Any time he'd get a cough, he didn't have the lung function to clear the phlegm from his chest,' Gillian said. 'So it would fester and then he'd get pneumonia.' Ambulances became routine. 'If he got a bit of a sniffle in the morning, we could need an ambulance by the afternoon,' Stephen said.
By 2020, the curvature of Harvey's spine had reached a life-threatening angle. In February 2022, he was added to the waiting list for corrective surgery. That June, the family were told it would take place in August. But the date came and went with no explanation. 'No one contacted us. At that point, we hadn't found our voice,' Gillian said.
As Harvey's condition worsened, his parents learnt to frame their concerns as suggestions. Too often, they said, symptoms were dismissed as behavioural issues rather than signs of illness. 'There was a pattern to this through his life,' Gillian said. 'They'd dismiss our concerns and we'd have to keep saying it.'
Like many other families whose children have spina bifida and scoliosis, when they made complaints to the hospital, but also politicians and the media, no one listened. Separately, leaked reports have since exposed how departments in some Children's Health Ireland-run hospitals are dysfunctional, held hostage by toxic internal cultures, professional rivalries, alleged corruption, bullying and a failure of leadership that often put patient safety at risk. This is why they are seeking an inquiry into the care provided to children suffering from scoliosis.
By 2023, Harvey's health had sharply declined. In March that year, a date was set for April then cancelled a week before. 'We were essentially left in limbo,' Gillian said. Harvey's scoliosis progressed rapidly. That summer, he broke several bones and developed a serious chest infection. 'I was quite angry at the time,' she said. 'He was losing weight. He was seven years old and weighed 15 kilos. At one stage I screamed and demanded they get a surgeon to look at him. I actually said, 'My child is going to die.''
It was suggested putting Harvey in a brace until he was old enough for spinal fusion. Gillian suspected the real plan was to keep him braced until he 'aged out' into the adult service. 'So we said no.' Then she discovered his name had vanished from the waiting list due to bureaucratic blunders. This spurned the family into going public. They posted details about Harvey's story on X, attracting tens of thousands of likes and praise. Harvey became an influencer of sorts.
The Morrisons did everything possible to get help for their son. They arranged for a specialist from Great Ormond Street Hospital in London to see Harvey in a clinic at Crumlin hospital. His view was unequivocal: Harvey needed surgery and spinal rods to stop the life-threatening scoliosis.
The family considered emigrating to Liverpool or Canada for treatment, but Alder Hey hospital in Liverpool had a two-year waiting list and Canada would not take Harvey. They were eventually introduced to Professor Damian McCormack, who examined Harvey in his clinic and devised a plan. His weight was low and bone density a concern — but only in his lower limbs. 'Professor McCormack said there's a slightly higher risk with Harvey but it wasn't to the point we shouldn't do it,' Gillian said.
By then, his condition had deteriorated significantly, the delays compounded by bureaucracy and what his parents call hospital indifference. 'Their hospitals are dysfunctional,' Gillian said. 'I remember once being asked to deliver a letter from one department to another. The woman told me it would take three days to arrive by internal post. It summed up everything.'
Delays in treating scoliosis can place patients at grave risk because the progressive curvature of the spine can distort the body's structure and compromise vital functions. When surgical interventions are postponed, the spine may curve to such an extent that it begins to impinge on the lungs, heart and other organs, leading to respiratory difficulties, chronic pain and reduced mobility.
In February 2022, Harvey's spinal curvature measured 75 degrees when he was first placed on the surgery list. By the time he went into theatre — 33 months later, in November 2024 — it had doubled to 130. His life was at risk, his frail body was failing and his parents had no choice.
Harvey faced complication after complication following surgery. On Christmas Eve, he was admitted to hospital with sepsis, forcing medics to remove some of the metalwork from his spine. He went on antibiotics and pulled through. Then, for the first time in six years, he began to thrive. 'He was eating,' Gillian said. 'He was starting to communicate.'
The family were given an electronic speech device by the HSE, similar to an iPad, that allowed Harvey to press buttons to speak. They took more than four years to get it. 'It had a button which said 'I love you',' Gillian said. 'I used to press it hoping that one day he would be able to press it to tell me he loves me. Then it was 'crisps', 'lollipop' and 'drink'. And then 'wheelchair'. It completely transformed his life and ours. We were beginning to think about holidays. We were just in the process of booking one, and rearranging the house … when he got sick.' How quickly everything can change.'
Harvey died in the early hours of July 29. He had fallen ill just days earlier, during a street party outside his home in Clondalkin. Gillian was the first to notice something was wrong — he had broken his leg. 'I brought him into the children's department at Connolly Hospital, but they sent him to Temple Street,' she said.
At Temple Street, an X-ray confirmed a clean break. His leg was put in a cast and they returned home. But later that day, Gillian noticed he was breathing rapidly and felt hot. She took him back to hospital. Overnight, doctors struggled to bring down his heart rate and could not find a source of infection. Gillian saw something that chilled her — Harvey's pupils were dilated, sluggish and barely reacting to light. Later, an ultrasound scan showed his internal organs were inflamed. Still, they believed he would pull through, as he always had. At times he was conscious, using his speech device to press the button for 'drink'.
'We couldn't give him water to drink because we didn't know what was wrong, but he was thirsty and kept hitting: drink, drink, drink, drink,' Gillian said. 'I just kept saying, 'I can't give you any more.''
Gillian and Stephen went home to rest. At 3am, the phone rang: Harvey was in cardiac arrest. By the time they reached the hospital, he had died, but the doctors were still trying to revive him. 'I knew at that point if they got him back, there would have been probably nothing there. It will never leave me,' Stephen said.
They spent time with their son before returning home to tell Harvey's younger sister and brother. Before leaving, Stephen leaned in close. 'The last thing I whispered into my son's ear was, 'I'm going to dedicate my life to you'.'
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Harvey was cremated after a colourful celebration of his short life. Gillian and Stephen asked mourners to wear bright colours. They have not begun to grieve. 'We haven't had time. I'm getting what needs to be done and then I will breathe,' Stephen said. 'I feel like his life was stolen from him because he spent so much of it — 33 months — on a waiting list.'
They say they are only now beginning to see the reality of what happened. 'It was impossible for us to plan for the future because we didn't know where we stood,' Gillian said. 'When you have a child waiting on scoliosis surgery, you live in limbo from one day to the next, never knowing when you're going to get that call. So you put everything on hold,' Gillian said. 'His life was put on pause while he was waiting for that surgery. In the end, Harvey only got eight months,' Gillian said.
Stephen's anger is raw. 'Why was our son denied the healthcare he needed throughout his whole life? Why did it take 33 months? I fear other parents are going to lose their children if they don't get to the bottom of the problems within CHI. A shiny new building in the form of the National Children's Hospital won't fix this disaster.'