When five-year-old Benedict Blythe woke up on the morning of 1 December 2021, he was excited that Christmas was coming. He came downstairs to open the first box in his Advent calendar containing a plastic springy frog and a dairy-free white chocolate (Benedict was allergic to milk, along with many other foods including soy, sesame, eggs, and nuts). It was Benedict’s first term at school – Barnack primary in Stamford – and he loved it so much that back in September, he had cried when he learned that there were no classes at the weekend.
That morning, he went off cheerfully to school with a small packet of dairy-free McVitie’s Gingerbread Men for snack time. He seemed happy and healthy when he arrived but by the afternoon, he was dead, having collapsed with anaphylaxis.
I meet Benedict’s mother, Helen Blythe, for coffee one spring morning in a country hotel not far from Stamford where she lives. We sit in a quiet back room and talk for two hours. To start with, there’s another person in the room, but when he hears what we will be talking about, he offers awkward condolences and leaves. The random pity of strangers is just one of the many things Helen has had to endure since the death of her son. She tells me that when she meets someone new she has to decide whether to say that she has one child or two (Benedict’s younger sister, Etta, also has multiple allergies). When our coffee arrives, it comes with a piece of buttery shortbread but Helen says I should take hers. She went vegan in 2020 when she realised she effectively was already as a vegetarian cooking for two children with milk and egg allergies.
Having never suffered from allergies themselves, it was a shock to Helen and her husband Pete when Benedict had his first violent allergic reaction at four months old. On Christmas Day, he had a mouthful of baby rice then, two days later, baby porridge containing traces of whey powder and immediately went very red in the face and started blowing “bile bubbles” out of his mouth. They phoned 999 but by the time the paramedics arrived, the bile bubbles had stopped and Helen had the impression that “they thought we were dramatic parents”. A few weeks after this, they tried him on a tiny bit of formula milk along with his breastmilk and he started crying loudly and vomiting until every last drop of the formula was out of his body. Despite these extreme reactions, Benedict’s GP insisted it was probably a virus causing his symptoms rather than the whey powder and Helen – a management consultant – had to fight to get him referred to an allergy clinic and eventually diagnosed. “Milk and eggs are part of everyone’s everyday culture,” Helen says. “It’s a hard mindset to see milk through a dangerous prism.”
One of the great dilemmas of parenthood is learning how to avoid driving yourself crazy with worry when there are dangers to your child all around. Babies are a defenceless bundle of needs, which is what makes it so terrifying and wonderful to be the person in charge of trying to keep them alive. In the case of parents of children with persistent food allergies, that terror is magnified many times over and continues long after babyhood. The fear can hit in the most mundane places: in supermarket aisles, at a cafe, in a school classroom. Studies have suggested that the anxiety levels of parents of children with food allergies are comparable to those of people with cancer or who have had a heart attack. When Helen chops cheese for Pete – which she stores in a separate fridge, away from Etta’s food – she feels she is handling “something hazardous”. She understands better than anyone how high the stakes are, but says that “you feel the anxiety and then you park it”. She always wanted Benedict and Etta to feel normal and free, despite their allergies. When it was the bake sale at Benedict’s school, she would make three separate allergen-free cakes so he could have a choice. She didn’t want him to be “the kid who can only have one cake”.
A year and a half on from losing Benedict, his parents still don’t know what caused his death – at the time of writing, the coroner’s inquest has not taken place. I have listened to a pre-inquest review, which was held in November 2022. One of the possibilities discussed was whether the particular batch of McVitie’s Gingerbread Men that Benedict ate that day could have been cross-contaminated with milk in the factory. A second unknown was whether the biscuits contained trace amounts of milk that could have been enough to trigger anaphylaxis. [Last week the Guardian revealed that more than a third of products labelled as vegan in UK shops contain traces of milk or egg.] Like countless other commercial foods, the gingerbread men were labelled “may also contain nuts, milk, soya”, a policy known as “defensive labelling” which food companies adopt to cover themselves, but which is infuriatingly unclear for families trying to feed a child with allergies. Yet Benedict had eaten these biscuits on numerous occasions before and had been fine. Moreover, as part of his medical care plan, his parents had been told by doctors that it was safe to add very small increments of milk into his diet. At this point, Benedict’s parents “actually have no idea” why their son died and although the uncertainty is awful, in other ways it also feels “better” not knowing, Helen tells me. If it turns out at the inquest that his death was straightforwardly preventable, “that’s a harder thing to come to terms with”.
The average time between consuming a food and cardiorespiratory arrest is only 30 minutes Food allergy, as the paediatric allergist Adam Fox has remarked, is the only chronic condition that can take a child from perfectly fine to unconscious in a classroom in such a short space of time. When disaster hits, it happens at lightning speed. In cases of anaphylactic death, the average time between consuming a food and cardiorespiratory arrest is only 30 minutes. Yet despite this, I was astonished to learn that there is not a legal requirement for British schools even to have an allergy policy. At the pre-inquest hearing, it was noted by a lawyer for the family that Barnack primary school did have a four-page allergy policy but that it was not very specific about what to do in cases of anaphylaxis. When I contacted Peterborough council to ask whether the school or the council had changed its allergy policy in the light of Benedict’s death, it emailed to say: “Following the incident, our health and safety team carried out a review of the school’s policies and did not identify any concerns.”
Benedict Blythe and his sister Etta in October 2021. Photograph: Courtesy of Helen Blythe
When the school phoned at 10.30am that December day to say Benedict had vomited and needed to be picked up, Helen wasn’t immediately panicked. She assumed it would turn out to be a “nothing thing”: one of those many small moments of distress that become a way of life for parents of children with food allergies. All his life, Benedict had suffered bouts of sickness after eating. Only a few weeks earlier, there had been a similar call from the school to say he had vomited after eating pizza, but by the time Helen picked him up he had perked up and was feeling much better. Whatever happened to Benedict on 1 December was different. By the time Pete arrived at the school, half an hour after the phone call, Benedict had already collapsed in a state of anaphylaxis. The school made a 999 call at 10.38am and he was taken by air ambulance at 11.05am. Paramedics gave him adrenaline but it failed to revive him and he officially died in Peterborough hospital early in the afternoon.
It’s worth remembering that what happened to Benedict is still vanishingly rare. Helen hopes that hearing Benedict’s story won’t make other allergy parents feel more scared than they already are. According to a study from 2013, young people are more likely to die from an accident or to be murdered than they are to die from food anaphylaxis. Researchers at…