A mum who lost her ‘beautiful and happy’ boy to a sudden death due to an undiagnosed eating disorder has shared her heartbreak and a warning to ‘other parents and mums’.
Seven year old Alfie Anthony Nicholls, who was autistic and non-verbal, became severely malnourished before suffering a cardiac arrest. An inquest into his death took place where his mum, Lucy Morrison, spoke out.
She had taken him to the hospital and his GP several times in the weeks leading up to his death, knowing something was wrong. The court heard that Alfie had significant sensory difficulties which affected his eating, resulting in a severely restrictive diet.
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However, medical professionals failed to identify his eating problems. They told his mother it was ‘part of his autism’.
Alfie tragically passed away on December 17, 2021, after collapsing at home, the M.E.N reports. It was only after his death that he was diagnosed with avoidant/restrictive food intake disorder (ARFID), a condition not uncommon in children with autism but overlooked by medics.
After the inquest at South manchester Coroner’s Court, a coroner criticised doctors for not recognising Alfie’s malnutrition until after his death. Stepping Hill Hospital bosses have since apologised to Alfie’s family for the ‘missed opportunities’ to help him.
His mum, who felt like she was ‘going crazy for years’, now wants a better understanding of ARFID and how it can be managed to ensure kids get the right nutrients. Lucy, the mother of Alfie, spoke about her struggles after his inquest, where she often felt isolated and ignored while caring for Alfie.
“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. 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.” The inquest heard 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.
But when he started at school in September 2019 that changed. The inquest heard 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.
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 a period of just over two months he had lost 2.4kg – 10 percent 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 she believed malnutrition caused Alfie’s heart to not function properly leading to a sudden cardiac arrest, and 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 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 the medical risks associated with ARFID are now better recognised than they were in 2021 when Alfie died and 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 curiosity 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 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 looking at the evidence it was clear 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 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.”