Boy, 7, died of undiagnosed eating disorder as he lived on just 'a few biscuits'
A mother has revealed her heartbreak after her "beautiful and happy" son suddenly died of an undiagnosed eating disorder that left him extremely malnourished.
Alfie Anthony Nicholls, who had autism and was nonverbal, sadly died at the age of seven following a cardiac arrest. This week an inquest into his death was held at South Manchester Coroner's Court in Stockport. It heard that Alfie's mother Lucy Morrison, 31, had gone to hospital with Alfie, and on several occasions to his GP, because she knew something was wrong.
However, problems with his diet were not identified by medical professionals, who were unable to spot that he was extremely malnourished and told his mother, Lucy, that it was "part of his autism". On December 17, 2021, Alfie died tragically, having collapsed at home, Manchester Evening News reports.
It was only after his death that he was diagnosed with with avoidant/restrictive food intake disorder (ARFID), which is not uncommon in children with autism but was not detected by medics. After the inquest, a coroner critiqued doctors for failing to identify Alfie's malnutrition and Stepping Hill Hospital bosses have apologised to Alfie's family for the "missed opportunities" to assist him.
His mother said she "spent years going crazy" and now wants there to be more awareness of ARFID and the best way to manage it so children can get enough nutrients. The inquest stated that before beginning the school day, Alfie was cared for by the early years team. There was a "good understanding of" what he was eating, with attempts made to make sure his diet was nutritional as possible. However, when he began school in September 2019 that changed. During the school day Alfie ate just "a few biscuits and a little bit of water".
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Alfie Nicholls, who had autism, died from undiagnosed eating disorder ARFID (Family Handout)The court heard that he was never seen by the school nurse and there was no attempt to understand what or how much he was eating. In June 2021, Alfie was referred to the speech and language team that ran food clinics, following concerns which were brought up by the school, however the referral looked mainly at his hydration levels.
Children's services offered support with Alfie's sleeping and respite but not his eating. During the coronavirus pandemic, Alfie was not weighed in a paediatric setting throughout 2020 and 2021. Finally he was weighed by a professional at Stepping Hill Hospital during an appointment on November 16, 2021, and then another time on December 14 by a pediatrician. During that period of a little over two months, he had lost 2.4kg, which is ten per cent of his body weight.
There was no plan on how Alfie was trying to put on the weight he had lost, and his mum was "extremely concerned" and expressed that she had not been heard. Three days following the December 14 appointment, Alfie collapsed at home. Paramedics did their best to resuscitate him but he died at Stepping Hill Hospital. A post mortem examination was undertaken because of Alfie's sudden and unexpected death, and pathologist Dr Gemma Petts identified that three of Alfie's ribs had been fractured during CPR.
His mum now wants everyone to be aware of the condition (Family Handout)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 stated that apart from finding "chronic malnutrition" in the bone marrow, he also found that Alfie's bone had thinned, which he said correlated with a "chronic malnutrition state".
Dr Petts' initial conclusion was 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 said she thought malnutrition meant Alfie's heart was not able to function properly, leading to cardiac arrest.
The deficit in micronutrients was a considerable factor in his cause of death. Presenting evidence during the inquest, consultant paediatrician Dr Elizabeth Newby, who visited Alfie a couple of days before he died on December 14, said she, and no other health professionals, understood Alfie was experiencing malnutrition when he was alive.
The last two years of his life included no detailed dietary record of what he was eating. Dr Newby stated the management of his anorexia had come on "leaps and bounds" in recent years, however the same cannot be said for ARFID up until 2022. Allegedly the medical risks associated with ARFID are better recognised than in 2021, when Alfie died. She added that if he were to be seen today, his family would be told to keep food diaries and he would receive frequent blood screenings.
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.”
There was no plan on how Alfie was trying to put on the weight he had lost, and his mum was "extremely concerned" (Family Handout)Ms Mutch stated it was problematic for those at the inquest to understand how hard "day to day living" would have been for Alfie and the amount of support he required. By examining the evidence, it was understood that by November 2021, the agencies responsible for Alfie's care had no understanding of how he was eating and there was a "lack of communication and professional curiosity" regarding the nutritional value of his det.
After the inquest, which ended 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".
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She 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.”
After the inquest, Alfie's mum Lucy revealed that she often felt alone and not listened to whilst caring for Alfie. She hopes that other mums won't struggle for as long as she did. She said: "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.
Paying tribute to Alfie, Lucy said: “He was the most beautiful and happy boy" (Family Handout)“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 mums 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 wants there to be more awareness of ARFID and how to manage it to make sure children get the nutrients they need. I want other mums 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 attempted to ensure Alfie's life was the same as any other little boy's.
She 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.”
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