Mother whose son died of undiagnosed eating disorder fears another child could suffer same fate
A mother whose seven-year-old son died after struggling with an undiagnosed eating disorder says she fears the same thing could happen to another child.
Alfie Nicholls who had a severely restricted diet that left him malnourished, suffered a fatal cardiac arrest at home in Stockport in December 2021.
After his death he was diagnosed with Arfid, a condition that has been recognised for more than 10 years but one that has no national guidelines about how best to treat it.
Lucy Morrison said: "When it came to eating food with textures and lumps, Alfie would gag on the food. He would really get distressed. That's once you got the food in his mouth. Even food in front of him could cause him to be very distressed.
"I always made it clear to every single professional it's because Alfie doesn't eat right. As a parent, you're constantly battling and asking for support and you're just left to do it on your own. I felt like I wasn't believed like I was going crazy."
An inquest into Alfie's death which was held last month in Stockport found there was a lack of communication and professional curiosity about the nutritional value of his diet.
Senior Coroner Alison Mutch said it was her job to determine from the evidence how malnutrition could contribute to a child’s death in ‘modern Britain’.
Looking at the evidence she said it was clear that the agencies involved with Alfie did not have a clear understanding of how much he was eating.
Lucy said she felt lighter after the inquest because for years she had blamed herself.
"Our children should have the right to be treated like children. If Alfie hadn't had autism, it was shown at the inquest that he would have been treated for the things he should have been.
"My son's voice should have been heard. I was his voice and I wasn't heard on several, several occasions. When I first found out about his cause of death I thought Alfie was the only child this has ever happened to.
"But now I believe there are thousands of children struggling with it. I really want to get my voice across to other parents that they are doing more than enough. It's the system that needs to massively change.
"This needs to be pushed and I don't just mean the Stockport area, I mean nationally.
"Do I believe it could happen again? Absolutely. Of course it can happen again."
Claire Cartwright-Clamp from Worcestershire is having similar problems with her son James. He eats only five 'safe foods' and is also autistic and non-verbal like Alfie was.
After seeing Alfie's story she made the trip up to Stockport to meet Lucy to see how they could join forces.
"When I read about Alfie's story and all he and Lucy went through it made my heart stop. It shouldn't be happening and I'll be damned if I let it happen again."
Lucy said speaking to a mother like Claire had helped her feel less alone.
"Firstly I feel heard because I realise I'm not alone. And I'm really hoping that Alfie's story and what he had to go through every day can now help James. And he's just one little boy. There's so many more."
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.”
NHS England also told us it that its eating disorder guidance for children and young people is being updated to include Arfid and is due to be published later this year.
What is ARFID?
Arfid stands for Avoidant Restrictive Food Intake Disorder. Signs can include:
Hypersensitivity to taste, texture, smell, appearance
Lack of interest in food
Refusal of an entire food group and fear of eating in case of choking or vomiting
It isn't picky eating or driven by body image or a desire to lose weight.
For help and advice contact