A heartbroken mother has told how her “beautiful and happy” autistic son died of cardiac arrest.
Alfie Anthony Nicholls, 7, who had autism and was non-verbal, tragically suffered cardiac arrest and died after battling an undiagnosed eating disorder.
An inquest into his death at South Manchester Coroner's Court in Stockport this week heard that Alfie's mother Lucy Morrison, 31, had taken him to hospital and to his GP several times in the weeks before his death, knowing full well that something was wrong.
The inquest heard that Alfie had significant sensory difficulties which manifested in his eating habits and resulted in an extremely restrictive diet.
However, problems with his diet went unrecognized by medical professionals, who failed to recognize that he was severely malnourished and told his mother, Ms Morrison, that this was “part of his autism”.
Alfie Anthony Nicholls, 7, who suffered from autism and was unable to speak, tragically died of cardiac arrest after battling an undiagnosed eating disorder
An inquest into his death at South Manchester Coroner's Court in Stockport this week heard that Alfie's mother Lucy Morrison, 31, (pictured) had taken him to hospital and to his GP several times in the weeks before his death, although she knew something was wrong
Alfie tragically died on December 17, 2021 after collapsing at home.
It was only after his death that he was diagnosed with avoidant/restrictive feeding disorder (ARFID), which is not uncommon in children with autism but went undiagnosed by doctors.
Following the inquest, a coroner criticized doctors for only noticing Alfie's malnutrition after his death, and bosses at Stepping Hill Hospital have since apologized to Alfie's family for the “missed opportunities” to help him.
His mother, who said she was “going crazy for years,” is now calling for more awareness about ARFID and how to deal with it to ensure children get the nutrients they need.
The inquest heard that Alfie was in the care of an early years team before starting school and that there was a “good understanding” of what he ate and efforts were made to ensure his diet was as nutritious as possible. However, when he started school in September 2019, that changed.
The inquest heard Alfie only consumed “a few biscuits and a little water” during the school day.
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 running food clinics after concerns were raised by the school. However, the referral focused solely on his fluid balance.
Childcare, meanwhile, offered Alfie support with sleeping and resting, but not with eating.
Due to the Covid-19 pandemic, Alfie was not weighed at a pediatric facility in 2020 and 2021.
He was finally weighed by a specialist at Stepping Hill Hospital at an appointment on November 16, 2021, and then again by a pediatrician on December 14.
During this period of just over two months, he had lost 2.4 kg – 10 percent of his body weight.
No plan was put in place to help Alfie regain the weight he had lost. His mother remained “extremely concerned” and felt she had not been heard, the inquest heard.
Three days after the December 14 appointment, Alfie collapsed at home. Although paramedics did everything they could to revive him, he later died at Stepping Hill Hospital.
Due to Alfie's sudden and unexpected death, a post-mortem examination was carried out and pathologist Dr. Gemma Petts discovered that three of Alfie's ribs had been broken 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) of the bone marrow, most commonly caused by anorexia or a nutrient deficiency.
Giving evidence during the inquest, he explained it was a “chronic process” that “builds up over a significant period of time”.
The inquest heard that Alfie had significant sensory difficulties which manifested in his eating habits and resulted in an extremely restrictive diet
Professor Mangham said as well as detecting “chronic malnutrition” in the bone marrow, he also noted that Alfie's bones had become thinner, which he said was consistent with a “chronic malnutrition condition”.
Dr. Petts made an initial conclusion about the “sudden death of a child with characteristics of malnutrition in the context of developmental delay and autism 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, resulting in sudden cardiac arrest, and that the micronutrient deficiency was a significant factor in his cause of death.
The consultant pediatrician Dr. Elizabeth Newby, who saw Alfie a few days before his death on December 14, gave evidence during the inquest and said she and no other medical professionals recognized that Alfie had suffered from malnutrition during his lifetime and that there were no detailed nutritional records of this give what he ate in the last two years of his life.
Dr. Newby said that treatment of anorexia has made “leaps of progress” in recent years, but the same was not the case with ARFID until 2022.
She added that the medical risks associated with ARFID are now better recognized than in 2021 when Alfie died, and that if he were seen now his family would be asked to keep food diaries and he would receive regular blood tests.
Senior coroner Alison said it was her job to use the evidence to find out how malnutrition could contribute to a child's death in “modern Britain”.
Ms Mutch described Alfie as “very much loved” not only by his family but by everyone in his care, and said that “the strength 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 who died unexpectedly in December 2021.”
However, Ms Mutch said it was difficult for those present at the inquest to understand how difficult daily life would have been for Alfie and how much support he needed.
She said that when looking at the evidence it was clear that the authorities responsible for Alfie's care in November 2021 had no understanding of how much he was eating and that there was a “lack of communication and professional curiosity” about the nutritional value of his diet.
After the inquest, which concluded on January 12, Ms Mutch recorded the narrative conclusion that Alfie “died suddenly, although his death was caused by malnutrition caused by a severely restricted diet and the extent of the malnutrition and that “The risk involved was not recognized by experts until after his death.”
She also said she would produce a Prevention of Future Deaths (PFD) report to the Health and Social Care Secretary, the Greater Manchester Integrated Care Partnership and the National Institute for Health and Care Excellence (Nice) calling for action on it This ensures that no more children die in a similar situation.
After the inquest, a spokesman for Stockport NHS Foundation Trust, which runs Stepping Hill Hospital, said: “Firstly we would like to once again express our condolences to Alfie's family. “Alfie's case was very tragic and complex.
“We deeply regret the missed opportunities identified during our internal review and investigative process and sincerely apologize to Alfie’s family.”
“Since this case, we have introduced new guidelines for the care and treatment of children with nutritional restrictions to ensure warning signs are more easily identified and responded to, and we are pleased that the coroner is satisfied with these measures.”
Following the inquest, Alfie's mother Lucy said she often felt alone and not listened to when caring for Alfie, and hopes other mothers will no longer have to struggle like she did.
'That is much. You always feel alone and I want other parents and mothers who keep declaring “my child isn't eating” and are told that it is part of their child's autism to know that this is actually not the case .
“Their children have big problems and in Alfie’s case he couldn’t say it because he was non-verbal.”
“They struggle with feeding and feeding and are afraid it won’t go away, and moms think they’re not doing enough.”
“I want moms to know right now that their voices are heard and I want them to know that they’re not going crazy.”
“For years I thought I was going crazy. I really hope that parents now feel heard and know that it's not just because their child is autistic.
“This still happens to children, which was very clear this week.” “There are children who eat less than Alfie.”
Lucy is calling for more awareness of ARFID and how to deal with it to ensure children get the nutrients they need.
“I want other mothers to feel like they are not alone and I want there to be awareness about this eating disorder (ARFID).”
“There are so many children who are labeled 'picky eaters' because of their autism.”
“They all go to school every day without food and are hungry,” she said.
Lucy's uncle Glenn Beswick added: “Lucy had always believed it was her fault, even though many people, like myself and her family, told her it wasn't her fault.”
“That showed today and also what a fantastic mother she was to Alfie.” Unfortunately, she was let down by the professionals in some areas.
“From Lucy's perspective, she did everything for that child.” “What she went through was an absolute tragedy.”
Lucy paid tribute to Alfie, saying: “He was the most beautiful and happiest boy.” He was always happy, not just his smile, it shone from his eyes.
“It was always Mum and Alfie, our saying was 'Mum and Alfie against the world'.”
Lucy said she tried to ensure Alfie's life was the same as all the other little boys, saying he loved nature, walking and swimming.
“Alfie was always brought up as Alfie, not Alfie with autism.” He was very sensory sensitive and didn't like a lot of things, but everything we tried he did.
“I knew he had autism from a young age but that never stopped him from being Alfie. “He loved the simple life, walks, birds and nature and planes, he loved planes. He also loved the water and swimming.
“We went into his world but also supported him so he felt like he was part of our world.”