A seven-year-old boy has died after battling with an undiagnosed eating disorder which left him severely malnourished. Alfie Anthony Nicholls had autism and was non-verbal and died aged just seven from a cardiac arrest.
An inquest into his death was heard at South Manchester Coroner’s Court in Stockport, reports the Manchester Evening News. It heard how Alfie’s mum Lucy Morrison, 31, took him to the GP and the hospital several times in the weeks leading up to his death, as she knew something was wrong.
Alfie had significant sensory difficulties, which meant he had a severely restricted diet. The problems with his diet were not picked up by medical professionals who failed to find out he was severely malnourished and who told his mother it was “part of his autism”. Alfie died on December 17, 2021.
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After his death, he was diagnosed with avoidant/restrictive food intake disorder (ARFID), which is not uncommon in children with autism. Following the inquest, the coroner criticised the doctors for not spotting Alfie’s malnutrition.
Stepping Hill Hospital bosses apologised to Alife’s family for the “missed opportunities” to help him. Lucy, who said she “spent years going crazy”, now calling for greater awareness of ARFID.
The inquest heard how Alfie was under the care of an early years team before he started school and there was a “good understanding” of what he was eating, and how to make sure he had a nutritional diet. He started school in September 2019, and this changed.
During the school day Alfie was consuming “a few biscuits and a little bit of water”. Alfie 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 which ran food clinics after concerns were raised by the school but this only focused on how much he was drinking. Children’s services only offered support with his sleeping and respite, but not his eating.
(Image: Family Handout)
Through 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 Hospital on November 16, 2021, and then on December 14.
This found he had lost 2.4kg over just two months, ten percent of his bodyweight. No plan on how to regain the weight was made. His mum was left “extremely concerned” and she felt she had not been heard.
Three days after the December 14 appointment, Alfie collapsed at home. Paramedics attempted to save him, but 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.
(Image: Family Handout)
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.
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.”
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.
(Image: Manchester Evening News)
“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. She said: “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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