A mum has spoken of her heartbreak after her ‘beautiful and happy’ boy died suddenly after battling an undiagnosed eating disorder that left him severely malnourished. Alfie Anthony Nicholls, who had autism and was non verbal, tragically died aged just seven years old after suffering a cardiac arrest.
An inquest into his death at South Manchester Coroner’s Court in Stockport held this week heard Alfie’s mum Lucy Morrison, 31, had taken him to hospital and his GP on a number of occasions in the weeks leading up to his death, knowing something was wrong.
The inquest heard Alfie had significant sensory difficulties which manifested in his eating and led to him having a severely restrictive diet. Problems with his diet were not picked up by medical professionals, however, who failed to spot that he was severely malnourished and told his mother, Lucy, that it was ‘part of his autism’. Alfie tragically died on December 17, 2021, after collapsing at home.
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It was not until after his death that he was diagnosed with avoidant/restrictive food intake disorder (ARFID), which is not uncommon in children with autism but was not detected by medics. Following the inquest, a coroner criticised doctors for not spotting Alfie’s malnutrition until after his death and Stepping Hill Hospital bosses have since apologised to Alfie’s family for the ‘missed opportunities’ to help him.
His mother, who said she ‘spent years going crazy’, is now calling for more awareness of ARFID and how to manage it to ensure children get the nutrients they need.
Alfie’s family were not offered any help with his eating
The inquest heard that before starting school Alfie was under the care of an early years team and there was a ‘good understanding’ of what he was eating, with efforts made to ensure his diet was as nutritional as possible. When he started at school in September 2019 that changed, however.
The inquest heard that during the school day Alfie was consuming just ‘a few biscuits and a little bit of water’. During his time at school Alfie was never seen by the school nurse and there was no attempt to understand what or how much he was consuming, the court heard.
In June 2021, Alfie was referred to the speech and language team which ran food clinics after concerns were raised by the school but the referral focused solely on his hydration levels. The children’s services, meanwhile, offered support with Alfie’s sleeping and respite but not his eating.
Due to the Covid-19 pandemic, Alfie was not weighed in a paediatric setting throughout 2020 and 2021. He was finally weighed by a professional at Stepping Hill Hospital during an appointment on November 16, 2021 and then again on December 14 by a paediatrician. Within that period of just over two months he had lost 2.4kg – 10 per cent of his body weight.
No plan on how Alfie was going to regain the weight he had lost was made. His mum remained ‘extremely concerned’ and felt she had not been heard, the inquest was told.
Three days after the December 14 appointment, Alfie collapsed at home. Despite paramedics doing everything they could to resuscitate him he later died at Stepping Hill Hospital.
A post mortem examination was carried out due to Alfie’s sudden and unexpected death and pathologist Dr Gemma Petts found three of Alfie’s ribs had been fractured during CPR.
Dr Petts sent a section of Alfie’s ribs to be examined by David Manghamon, a professor of Musculoskeletal Pathology, who found evidence of ‘atrophy’ (wasting away) of bone marrow, most commonly caused by anorexia or a nutrient deficiency condition.
Giving evidence during the inquest, he explained it is a ‘chronic process’ that ‘builds up over a considerable length of time’.
Professor Mangham said aside from finding ‘chronic malnutrition’ in the bone marrow he also found Alfie’s bone had thinned, which he said was consistent with a ‘chronic malnutrition state’.
Dr Petts gave an initial conclusion of ‘sudden death in a child with features of malnutrition on a background of developmental delay and an autistic spectrum disorder’, based on the balance of probabilities and the information she had received.
She added that she believed malnutrition caused Alfie’s heart to not function properly leading to a sudden cardiac arrest, and that the deficit in micronutrients was a significant factor in his cause of death.
Giving evidence during the inquest, consultant paediatrician Dr Elizabeth Newby, who saw Alfie several days before his death on December 14, said she, and no other health professionals, realised Alfie was suffering from malnutrition when he was alive and that there was no detailed dietary record of what he was eating in the last two years of his life.
Dr Newby said that the management of anorexia has come on ‘leaps and bounds’ in recent years but the same was not the case for ARFID up until 2022.
She added that the medical risks associated with ARFID are now better recognised than they were in 2021 when Alfie died and that if Alfie were to be seen now his family would be asked to keep food diaries and he would receive regular blood screenings.
‘There was a lack of professional curisoity in Alfie’s nutritional care’
Senior Coroner Alison said it was her job to determine from the evidence how malnutrition could contribute to a child’s death in ‘modern Britain’.
Ms Mutch described Alfie as ‘much loved’ by not only his family but all those in his care and said that the ‘force of his personality shone through’.
She added: “Alfie was not an autistic child, he was a child with autism and it’s important to remember that because he was first and foremost a child. A child who died unexpectedly in December 2021.”
Ms Mutch said it was however difficult for those attending the inquest to appreciate how difficult ‘day to day living’ would have been for Alfie and how much support he needed.
She said that looking at the evidence it was clear that by November 2021 the agencies responsible for Alfie’s care did not have an understanding of how much he was eating and there was a ‘lack of communication and professional curiosity’ about the nutritional value of his diet.
Following the inquest, which concluded on Friday (January 12), Ms Mutch recorded a narrative conclusion that Alfie ‘died suddenly where his death was contributed to by malnutrition which was caused by a severely restricted diet and where the level of malnutrition and consequential risk it posed was not recognised by professionals until after his death.’
She also said she would be writing a prevention of future deaths (PFD) report to the Secretary of State for Health and Social Care, the Greater Manchester Integrated Care Partnership, and The National Institute for Health and Care Excellence (Nice) requiring action to be taken to ensure no other children die in a similar situation.
Following the inquest, a spokesperson for Stockport NHS Foundation Trust, which runs Stepping Hill Hospital, said: “Firstly, we’d like to offer our condolences again to Alfie’s family. Alfie’s was a very tragic and complex case. We are deeply sorry for the missed opportunities identified in our internal review and through the inquest process, and we express our sincere apologies to Alfie’s family.
“Since this case we have introduced new guidelines for the care and management of children with a restricted diet to help ensure warning signs can be more readily identified and acted upon, and we are glad that the coroner is satisfied with these actions.”
‘I want mums to know their voices are going to be heard’
Following the inquest, Alfie’s mum Lucy said she often felt alone and not listened to when caring for Alfie and hopes other mums will no longer struggle as she did.
“It’s a lot. You’re always feeling alone and I want other parents and mums who are going back and forth explaining ‘my child isn’t eating’ and being told it’s part of their child’s autism to know the truth is it’s not.
“Their children are severely struggling and in Alfie’s case he couldn’t voice it because he was non verbal. They’re struggling with food and intake and the fear it’s not going to go down and mum’s are thinking they’re not doing enough.
“I want mum’s now to know that their voices are going to be heard and I want them to know they’re not going crazy. For years I thought I was going crazy. I’m really hoping parents will now feel heard and know it’s not just because their child is autistic.
“This is still happening to children, which has been made very clear this week. There’s children eating less than Alfie.”
Lucy is calling for there to be more awareness of ARFID and how to manage it to ensure children get the nutrients they need.
“I want other mum’s to feel like they’re not alone and I want there to be awareness of this eating disorder (ARFID).
“There’s so many children who are being put down as ‘picky eaters’ because of their autism. They’re all just going to school every day with nothing in them and they’re hungry,” she said.
Lucy’s uncle, Glenn Beswick, added: “Lucy had always thought it was her fault when a lot of people were telling her, like myself and her family, that it’s not her fault. That’s been shown today along with what a fantastic mother she was to Alfie. Unfortunately she was let down in some areas by professionals. From Lucy’s point of view she’s done everything for that child. What she’s gone through has been an absolute tragedy.”
Paying tribute to Alfie, Lucy said: “He was the most beautiful and happy boy. He was always happy, not just his smile, it beamed out of his eyes.
“It was always mummy and Alfie, our saying was ‘mummy and Alfie against the world’.”
Lucy said she tried to make sure Alfie’s life was the same as any other little boy’s and said he loved nature, going on walks, and swimming.
“Alfie has always been brought up as Alfie not Alfie with autism. He was very sensory and didn’t like a lot of things but anything we tried he did.
“I always knew he had autism from a young age but it never stopped him being Alfie. He loved the simple life, walks, birds and nature, and aeroplanes, he loved aeroplanes. He also loved the water and swimming.
“We went into his world but also supported him to make him feel like he’s part of our world.”