a day ago
A Gaeltacht tragedy: ‘I never would have sent her if I thought anything was wrong'
One year ago, 14-year-old Amelia Belle Ferguson
collapsed while out on a hike
on one of her last days at an Irish college in
Connemara
.
When they saw her on the ground with her shoulders shaking, her friends thought Amelia was just laughing at herself for falling over. But Amelia's heart was failing. During that day, unknown to anyone, her heart had been beating in chaotic rhythms.
When her friends turned Amelia over, they saw that her face was blue. She died on that hill in Connemara on June 13th, 2024.
This weekend, as they mark the first anniversary of Amelia's death near her home in Firhouse,
Dublin
, her family are seeking an independent review of the care she received and the information shared with them by
Children's Health Ireland
(CHI) in the final months of her life.
READ MORE
Minister for Health
Jennifer Carroll MacNeill
has agreed to meet Suzi Mangan, Amelia's mother, to discuss her daughter's case.
The family believe that concerns raised at what became Amelia's final appointment in May 2024 should have been taken more seriously, while the family only learned important details about her health records after she died.
'I never would have sent her to the Gaeltacht if I thought that there was anything wrong,' says Mangan.
Pictures of Amelia Belle Ferguson on the wall of her home in Firhouse, Dublin. Photograph: Bryan O'Brien
Amelia was born premature on February 18th, 2010, 37 weeks into her mother's pregnancy. As a tiny newborn, weighing just 2.5kg (5lbs 10oz), she had an operation to fit a pacemaker because her natural pacemaker was not working.
She would regularly attend Crumlin Children's Hospital in Dublin for monitoring as she grew up. But for most of her childhood, she was hardly ever sick – 'never even on antibiotics much,' says Mangan.
In January 2018, Amelia attended an appointment at Crumlin Children's Hospital for what should have been a routine operation to get her pacemaker changed. But when an ashen-faced surgeon came out of the theatre, he told her mother that Amelia was flatlining on the operating table. The little girl was resuscitated, put on life support, and then fell into a coma.
Mangan has pictures on her phone of Amelia looking tiny, with burn marks on her chest from a defibrillator and tubes in her mouth.
'They didn't know what had gone wrong,' she says.
Back when Amelia had her pacemaker fitted as a baby, her father, Brian Ferguson, had asked doctors if the device's cord could get wrapped around her heart. He is a plumber and had been thinking about the mechanics of the pacemaker cord.
'We were told no – that was not possible,' says Mangan.
A photo of Amelia on the mantlepiece. Photograph: Bryan O'Brien
But by the time Amelia was on the operating table in 2018, the supposedly impossible had happened: Amelia was suffering from cardiac strangulation, the cord of her pacemaker wrapped so tightly around her heart that surgeons described it to her parents as being akin to wire embedded around the bark of a tree.
Amelia was one of fewer than 10 people in the world that this is known to have happened to. Before the delicate operation to unwrap the cord from her heart, her parents had to sign a consent form that conceded the high chance that Amelia could die during the procedure.
'We had no choice,' says Mangan. 'She was going to die if they didn't do anything.'
The operation was a success, but it left a scar on Amelia's heart. The family say it was not explained to them that such a scar can carry risks.
In her grief after Amelia's death, Mangan has thrown herself into research and Amelia's medical files. She found an article in a medical journal in which one of Amelia's doctors discussed the risks of such an operation.
She also found references in Amelia's files to anomalies such as murmurs and leaky heart valves which were recorded in both 2017 and 2022, which she said the family had never been told about.
By January 2024, Amelia had grown into a very thoughtful, kind, curious, funny, creative and sensitive 13-year-old. She loved music and languages. She had an appointment that month at Crumlin Children's Hospital, which was followed by her final appointment, on May 21st.
Amelia Belle Ferguson: The Minister for Health has agreed to meet Suzi Mangan to discuss her daughter's case. Photograph: Bryan O'Brien
According to her January 26th appointment, her pacemaker battery was due to last until 2027. But by May, a new reading showed it had depleted, to 2026.
Mangan was concerned, but CHI told her not to worry. At the same appointment, Amelia reported having dizzy spells. Her mother was worried about the fact that Amelia would be going to the Gaeltacht in just two weeks' time.
'They said: 'She's fine.''
Eventually, it was agreed at the May appointment to fit Amelia with a Holter monitor – a small, wearable device that records the heart's rhythm – and to ask her to keep a diary while she was wearing it. She was given a follow-up appointment for November.
Since Amelia's death, the family said they have found out that the Holter monitor identified two abnormalities, though these were later described by staff as not concerning.
The Holter monitor was read on June 4th – 10 days after it was handed back to Crumlin Children's Hospital. By then, Amelia was already in Galway.
'Even if they weren't concerned, we should have been told,' says Mangan . 'I would have gone to Galway and collected her if I thought something was wrong.'
The frantic call on June 13th, and the tortuous near-silent journey to Galway for Amelia's parents, are a blur. Amelia's younger sister Poppy, now 13, followed in a car with her grandparents, not yet knowing her sister's fate. Mangan remembers them calling to say they were seven minutes away, and thinking: 'Seven minutes until I have to ruin Poppy's life.'
Mangan says CHI described Amelia's death as a 'rare event' that 'could have happened to any child on that hill that day'.
'I do not believe that for one second,' she says.
Despite the symptoms flagged and the decision to fit Amelia with a Holter monitor at her last appointment, CHI would later send a letter stating that her cardiovascular examination that day was 'normal'.
'She is doing well and does not have any symptoms. She has good energy,' the letter states.
'It arrived here on the day of Amelia's funeral,' says Mangan.
CHI said in a statement: 'Receiving a letter about Amelia's care on the day of her funeral is heartbreaking. CHI deeply regrets the timing of that letter and we will look at our administrative processes in this regard.'
'Even if they weren't concerned, we should have been told,' says Amelia's mother Suzi Mangan. Photograph: Bryan O'Brien
Mangan says she is troubled by some experiences with 'dismissive' hospital staff, including after Amelia died. She says she has spent the past year trying to get answers, and Amelia's Holter monitor diary, from CHI.
She sent a list of detailed questions to CHI after a meeting to discuss Amelia's case in April, asking the hospital to respond by May 23rd. She is still waiting for a response, though she did receive an email from CHI following a detailed list of questions from The Irish Times. In response to those questions, CHI said in a statement that it could not 'provide details about the care provided to individual patients publicly'.
'Our deepest sympathy is with Amelia's family at such a difficult time. Children's Health Ireland is, of course, aware of Amelia's case and we remain committed to working with her family directly to answer any and all questions they have about Amelia's care with us,' the statement read.
[
Children's hospital commentary often `ill-informed' contractor BAM tells Minister for Health
Opens in new window
]
On the wall of Mangan's kitchen in Firhouse, there's a small purple painting on a canvas print. When seven-year-old Amelia woke up from her coma, she gave a matter-of-fact account of having visited a nice place where she got to meet lots of her late family members. Her mother asked her to paint a picture of what heaven looked like. Amelia did, describing how she had felt happy and safe there.
'That's all that's keeping me going now,' says Mangan.
In her livingroom window, Mangan has stuck a photograph taken on An Trá Mhór in Connemara on a blistering hot day in 2023. Amelia had been at Coláiste Lurgan that summer, and the family had gone to visit and taken her to the beach.
Under the bright blue sky, the teenager had written a message in sand in big swooping letters: 'BHÍ AMELIA ANSEO,' it said – 'Amelia was here.'
Amelia at An Trá Mhór, Connemara, in the summer of 2023. Photograph: Ferguson family
