A teenage girl became blind after her “picky” eating disorder left her so malnourished it almost killed her.
Bella Mildon, 16, would only eat crisps and french fries as a toddler. Mum Sam and dad Dave rushed her to the doctors over concerns for her diet but were reassured by medics that her weight was fine.
Bella, who is non-verbal and autistic, went on to follow a diet so restricted that it caused a nutritional deficiency so pronounced it left her blind and almost led to her death. When she was 12, normally athletic Bella started bumping into things.
Then one awful day her mum found her collapsed at home.
Recalling the horror moment, Sam, 57, a former public relations specialist, told the Mirror: “I walked in to wake Bella and she was completely unresponsive, technically dead. I was beside myself.” Bella was rushed to hospital, where medics saved her life – but Sam and Dave, 51, a carpenter, were given the devastating news that the teenager had lost her sight.
“She had the same level of vitamin A as they would expect to see in someone in the Third World. We’d told doctors time and again we were worried about Bella’s health because her diet was so restricted. Because the foods she eats are quite high-calorie, her weight was always seen as acceptable – but she was desperately ill.”
Bella was found to have been suffering from a little-known but potentially dangerous eating disorder called avoidant/restrictive food intake disorder, known as ARFID. Those living with the disorder, including children as well as adults, severely limit the types of food they can eat.
Eating disorder charity BEAT has seen a seven-fold increase in calls about the disorder in just five years but says few GPs know what it is.
Sam, of Nailsea, Somerset, now a full-time carer for Bella, says: “It’s tough knowing her sight loss could have been entirely preventable if her eating disorder had been taken seriously from the outset.”
Sam and husband Dave have since called for NICE guidelines to be changed so they specify that autistic children with eating disorders should have comprehensive tests for nutritional deficiencies. Like the Mildons, Jo and Mark Read had to fight for an eating disorder diagnosis for their daughter, Ethel.
The five-year-old will only eat chicken nuggets and dry cereal, and drink milk.
Jo, 38, a hospitality worker from Winchester, Hants, says: “Our older daughter Lily is 13 and has always been an adventurous eater. But from when Ethel was first weaned she would always refuse anything slightly wet or saucy. The health visitor told us to keep trying. When she was one, she went for six months without eating anything warm. She would only eat toddler cereal bars or wafers.
“I repeatedly took her to the GP and was always told that because she was growing she’d be fine. We tried everything to get her to eat a balanced diet. We even bribed her with sticker charts, different plates, cutting her food into fun shapes, but nothing worked. Eventually I came across ARFID online but our GP said he’d never heard of it.”
After Jo repeatedly pushed for help, Esther went to hospital for psychological observations – but she refused to eat different foods and lost 2lb.
Jo said: “I hate feeding her nuggets nearly every day, but I’d rather her eat some food than no food – I’m not going to let her starve. Sometimes she can’t even manage to sit at the dinner table with us – it’s just too overwhelming for her to be that close to food.”
Psychologist and ARFID specialist Mona Hansen says getting a diagnosis or help on the NHS can be tricky. She says: “Although ARFID has been recognised as a mental disorder since 2013, there are still many medical professionals who are not aware of it.”
Sufferers have been known to have sensory issues around food, which can be linked to autism, or a lack of interest in eating, which is quite common in ADHD patients, Jo said. Others develop the disorder after enduring a choking experience as a child, which causes the brain to associate certain foods with danger.
Ms Hansen said: “Sufferers usually prefer food which is bland and palatable, so things like pasta, toast and cereal often appeal to them as safe foods. I’ve had an 11-year-old who had to be home-schooled because he was so ill he needed to be tube fed.”
Ms Hansen believes the condition is treatable, especially for adults. However, lack of treatment access, or understanding of ARFID, means many people try to soldier on without help.
Ms Hansen said: “Some people have lived with the condition for their whole lives. I had a patient in her 70s who had lived most of her life just eating two or three foods.”
Dr Jo Cryer, who co-leads the complex feeding service at Evelina London Children’s Hospital and is a trustee of ARFID Awareness UK, says more people are being diagnosed due to increased awareness.
Any treatment plan must be tailored to the patient, as ARFID differs from person to person, she says, adding: “There are various strategies, including forms of therapy that can be offered, as well as nutritional support, which can determine whether additional nutritional supplements are needed.”
Andrew Radford, chief executive of BEAT, finds it worrying that specialist care is not always immediately available.
He says: “All too often we hear from people who have been unable to get treatment close to home, or have faced waits of months or even years to get the help they need. ARFID is an eating disorder that rarely gets the attention it deserves. Now is the time for NHS decision-makers to ensure that anyone who needs support can get it from trained and fully equipped teams across the country.”
A spokesman for the NHS said: “We know that more work is needed, which is why the NHS is also refreshing guidance on children and young people’s eating disorders, strengthening early intervention, while ensuring swift access to specialist support as soon as an eating disorder is suspected.”
Dr Mona Hansen’s tips if you think your child has ARFID:
- See a GP
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Don’t coerce children into eating – secretly adding vegetables to food will change the texture and could be distressing.
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Let them see you eating a wide range of foods and allow them to try other tastes and textures if they ask to, but don’t pressure them to eat.
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Don’t get angry if they can’t eat.
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