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”.
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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”.
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.”
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 Imperial College London found that from 1998 to 2018, deaths from food anaphylaxis actually decreased. Of those admitted to hospital with food anaphylaxis, 0.7% died in 1998 whereas in 2018 this had fallen to 0.2%. On the other hand, the number of families living every day with the possibility that this might happen to their children is much greater than it was 20 years ago. Hospital admissions for food anaphylaxis have increased from 1.23 per 100,000 people in 1998 to 4.04 per 100,000 in 2018: an annual increase of 5.7%. The largest increase in hospital admissions for food anaphylaxis has been among children younger than 15. The most common single cause of fatal anaphylaxis in this age group is now not peanuts but cow’s milk.
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The rise in food allergies is one of the great mysteries of our time. Foods that are positively healthy for most of us can be toxic to someone with allergies, even in quantities smaller than a teaspoon. From celery to walnuts, fish to sesame seeds, peas to wheat, the list of major food allergens gets ever longer. What’s more, allergies – which were once seen as mostly limited to childhood – are now more likely to continue well into later life. Rosalind Rathouse, who runs the Cookery School in Little Portland Street, London, offering sustainable cookery courses to businesses and individuals, has noticed that her students are far more likely to have allergies than 20 years ago. She has also noticed that the range of allergens is much greater than in the past. “This week, we ran a course on Middle Eastern cooking and one person had a citrus allergy.” Her instructors needed to figure out ways to replace the sourness of lemons with other ingredients such as tamarind and pomegranate molasses.
Another mystery about food allergies is that it isn’t all that easy to define what they actually are. As medical anthropologist Theresa MacPhail explains in her excellent new book Allergic: How Our Immune System Reacts to a Changing World, “Allergy is a strange ‘illness’. You’re not sick, but you’re not well, either. If your immune response gets triggered by the wrong things, it will kill you by trying to protect you.” In essence, as MacPhail writes, allergy is what happens when “your immune system has a hyperactive response to an otherwise harmless substance”. In the case of food allergy, the reaction is driven by immunoglobulin E (IgE) antibodies. This immune response is one of the things that makes food allergies different from food intolerances such as lactose intolerance or autoimmune diseases such as coeliac disease.
While food intolerances can be miserable and annoying, food allergies have the potential to cause anaphylaxis, a severe and sudden reaction that may result in wheezing, a swollen tongue, difficulty in swallowing and, in extreme cases, loss of consciousness. Before I began writing this piece, I believed that someone’s food allergies could be either mild or serious but allergy researcher Paul Turner of Imperial corrects me: “That’s rubbish. Allergy is allergy.” The unsettling thing is that every food allergy has the potential to cause an anaphylactic reaction even if someone’s symptoms are currently not too bothersome. Turner’s research has shown it is extremely difficult to predict who will suffer fatal or near fatal anaphylaxis. Most people who suffer a severe anaphylaxis have had only milder reactions in the past. One of the very few predictors of severe anaphylaxis is that it is more likely to take place after someone has exercised, but no one is suggesting people with allergies should give up exercising.
Given the life-threatening potential of food allergies, it’s terrifying to see the extent to which they are on the rise all over the world. Food allergy affects an estimated 7.7% of Chinese children (aged 0-2), and there are cases of peanut allergy in India where it was once unheard of. It’s impossible to say precisely why this is so. MacPhail says the consensus is that there is no single smoking gun to explain the epidemic; she quotes an allergy doctor in Cincinnati, Dr Neeru Khurana Hershey, who says: “There’s no one thing. If there were one thing, we would’ve found it.” One of the most plausible lines of inquiry is the “epithelial barrier hypothesis” that many food allergies originate through “leaky skin” rather than through what is eaten. There is huge crossover between children who have eczema and children who have food allergy, and research has shown that peanut allergy can be triggered by rubbing children’s eczema with creams based on peanut oil. But it’s complicated, given that there is no evidence that milk allergy, which typically has earlier onset than peanut allergy, is acquired through the skin.
No one is born with a food allergy, although it does seem to run in families to some extent, so something in the modern environment is driving it. MacPhail points out the startling fact that pets are now suffering the same allergic symptoms as their owners, with “skin eruptions and persistent scratching and grooming” in dogs, whereas species of animals that do not live alongside humans seem to be free from allergies so far. The impossible part is figuring out what in the environment – from our stress levels to what we eat – is doing this. In some ways, our world is too dirty now – the rise in asthma is clearly linked to increased air pollution – and in other ways, it is too clean. One of the most popular theories is the “hygiene hypothesis”: the idea that we grow up in a “too clean” environment, which could make our immune systems become sensitised. Another related theory is that our sedentary indoor lives are depriving us of vitamin D from sunlight (vitamin D appears to offer some protection against allergies). Perhaps the most persuasive explanation is the changing composition of gut microbes in modern times, but this is really just another way of saying that food allergies are caused by “everything”, given that the composition of our gut microbes is affected by everything from eating ultra-processed food to being born by caesarean section.
Over a Zoom call from her home in New York, MacPhail tells me that “we are just at the beginning of understanding what is going on” when someone has an allergic attack, and it will probably be at least a decade before scientists can fully explain what is happening at the cellular level in our bodies. “The most fascinating thing for me,” she says, “was that even in a person with allergies, some of your cells are still tolerating the allergen. It’s not all of your cells that are making the decision to react, it’s the majority of them.” MacPhail looks forward to the day when we will be able to watch in real time and see how someone’s cells respond to peanut protein when they are allergic. She set out to write the book to unravel the mystery of why her own father died of anaphylaxis after a bee sting in 1996; in the end her best guess was he was stressed, too poor to carry an EpiPen and lived in an “out-of-balance world”.
Whatever the causes of the allergy epidemic, MacPhail’s concern is that “it’s a prickly problem that we have no idea how to handle”, and that it will only get worse as the number of children with allergy continues to rise. Ten years from now, she says, “We are talking about 10 or 20 students out of every 100 … That’s a problem we can’t ignore and we don’t have any processes in place to deal with it except for the EpiPen.” The problem of allergy, MacPhail argues, gives the lie to the prevailing US view of healthcare that sickness or wellness is an individual affair. Looking after children with food allergies is something that requires collective action, on the part of society, MacPhail tells me. If someone has an airborne food allergy, you can’t just tell them to take personal responsibility for their condition. In the 1980s and 90s, many US schools dealt with children with allergies by making them sit at a separate “peanut table”. This only deepened the stigma of food allergies.
The peanut tables have mainly gone from US schools but many children with food allergies still suffer bullying. MacPhail writes of “a 12-year-old girl with a dairy allergy who had nacho cheese dip rubbed in her face; a 13-year-old boy who died after having a slice of cheese thrown on his skin; a young adult male recalling how many times someone used a peanut butter sandwich to shoo him away from a lunch table”. Allergy bullying is symptomatic of a larger cultural problem, which is that children with allergies are still too often treated as a class apart. This is dangerous, because the more children with allergies feel they are not accepted, the more likely they are to engage in risky behaviour in order to fit in, for example by failing to carry their EpiPen.
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Back in Stamford, Helen Blythe suffered her own version of allergy bullying. The day after he died, she posted a photograph of Benedict on Twitter with his toy monkey, Ray. The post read: “This is my son, Benedict. He died yesterday, suddenly, aged 5. I just want everyone to know that he existed, and to see his beautiful smile and know how wonderful he was.” Helen had only a few hundred followers but to her surprise, the post ended up getting 900,000 likes and many supportive responses from other parents who had lost children.
At first, she says, this outpouring of sympathy helped. “When someone close to you dies, you feel the world should stop … and the world did stop. We were lucky to have that experience.” By the second day of the post going viral, however, things changed. She started getting death threats and other abusive and obscene messages from anti-vaxxers accusing her of killing her own child. At this time, it wasn’t even legal for five-year-old children in Britain to receive the Covid-19 vaccine, but this didn’t stop the trolls. “You put a photo up of your son holding his cuddly monkey and suddenly you are hunted,” she says. Over the following days, one of Helen’s attackers shared a photo on Facebook of a young boy sitting on a woman’s lap while he got an injection. The caption read: “Smiling behind a mask whilst getting her five-year-old-son jabbed. I care not one jot for her. RIP Benedict who passed away.” Reuters factchecked Benedict’s death and published an online article on 13 December 2021 confirming that his death had nothing to do with Covid-19 vaccines and that the picture shared online actually showed a mother and son, who was alive, in the US.
Once the online abuse had died down, Helen and Pete discussed what they wanted to do in honour of Benedict’s memory. They set up the Benedict Blythe foundation. Most of its work focuses on things that Benedict loved. By the time he was one, he could do a 24-piece Thomas the Tank Engine jigsaw and he was also gifted in maths, so much of the foundation’s work is devoted to supporting children who learn in different ways. It also has a scheme called Rays of Light in honour of Benedict’s beloved cuddly monkey. Families who have lost a child can request a monkey like Ray to be sent to bereaved siblings.
The Blythes never intended the foundation to become an allergy charity and they hope that after they have succeeded in changing the law, they can put this “sad stuff” to one side and focus more on the work that helps them remember the joy of Benedict’s life. But they felt a responsibility to do something, because they knew that “people will listen” to bereaved parents. They are asking for new legislation in four parts. The first is simply that all schools should have an allergy policy, including an anaphylaxis plan. As things stand, schools are required in general terms to “support” pupils with any medical condition but when it comes to allergies, as Helen says, they can do “as much or as little as they like”. The second is that each child with food allergies should have their own individual health plan, regularly updated. The third is that schools should hold spare adrenaline pens. The fourth is that there should be additional training on allergies and anaphylaxis for teachers and staff. Helen tells me the end goal is not just to prevent children with food allergy from dying: “It’s also not OK for children to experience really awful reactions in a setting where they should be safe.” After Benedict died, she received a huge number of messages from people whose children had suffered near misses with experiences of preventable anaphylaxis in UK schools.
Helen and Pete are far from being the first campaigners to point out that British schools – with notable exceptions – are not doing a good enough job of keeping children with food allergies safe. In January 2020, nearly two years before Benedict’s death, Adam Fox and Paul Turner, two of the leading allergy researchers in the UK, called for urgent action to keep food-allergic children safe in schools. But still nothing has happened. Fox and Turner cited the deaths of Mohammed Ismaeel Ashraf and Karanbir Cheema. Mohammed, who was allergic to dairy, nuts, kiwi fruit and some fish, died aged nine at a school in Birmingham after consuming a lunch of fish fingers and chips. There was a delay in giving him his EpiPen. Karanbir, aged 13, who was allergic to dairy, died in 2017 after someone flicked cheese at him at a school in London. After the cheese landed on his neck, Karanbir pulled his shirt off in panic because he couldn’t breathe. He was given an EpiPen at school but it was a year out of date and he died two weeks later at Great Ormond Street hospital.
It is striking that both of these deaths came from children of British south Asian families. When it comes to allergy care, there are strong racial and economic inequalities. Research has found that British south Asian mothers experienced significant delays in getting their children diagnosed with food allergies. Several children in the study had to wait more than two years for a diagnosis. In the US, MacPhail writes that “Black and Hispanic children are far less likely to be diagnosed with food allergy and far more likely to end up in the ER with anaphylaxis”. Food allergy is also something that is much harder to manage for households on low incomes. In 2022, research from the Food Standards Agency found that people with food allergies paid an extra 14p for every pound compared with those who didn’t need to buy “free from” foods. With current levels of food inflation, the price of these special products has become even more exorbitant, which leaves poorer households with a choice between going hungry and risking eating foods that could put them in danger.
Meanwhile, the system for adrenaline pens in British schools is a mess. The way these pens are handled not only wastes millions of pounds every year and generates huge amounts of plastic waste but puts children at risk. Someone who supports the Blythes’ call for every school to be supplied with its own pens across the board is Paul Turner, the allergy researcher – who also runs the website Spare Pens in Schools. When I speak to Turner via Zoom, he is in Hawaii for an allergy conference. He did his medical training in Australia where he saw firsthand what a difference it made when school staff were given training in how to handle anaphylaxis and consistent access to pens. By contrast, Turner says that the handling of allergies in UK schools is “patchy”. Schools typically require students to bring in their own adrenaline pens. This means that in a single school, there might be 15-20 students requiring pens, each stored in separate Tupperware boxes. In an emergency, rummaging through boxes looking for the right pen can waste valuable time. The pens can be one of three brands – Emerade, EpiPen and Jext – each of which has slightly different instructions. (Benedict had a Jext pen, although Helen is not sure if it was used on him before the paramedics arrived.) If the student’s pens are out of date or missing, the teacher is left in a quandary. Under current law, they can’t use “child B’s pen for child A”, as Turner puts it, even if child A has collapsed with anaphylaxis.
A better solution would be for every school to be supplied with standardised pens. These could be used on any child – depending on the dose they need. Turner says his research shows that supplying schools with pens directly would save the NHS £3m-4m. It would also be more environmentally friendly, given that 99% of pens prescribed are thrown away unused. The biggest obstacle, Turner says, is that it would require the Department of Health and Social Care to coordinate action with the Department for Education, and Turner fears it won’t happen without a powerful person in government prepared to take it “under their wing” – in other words, to recognise that food allergy actually matters.
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‘Allergy doesn’t have any love” as a political issue, says Sarah Knight, one of the supporters of the Blythes’ petition and the founder of The Allergy Team, an organisation that offers support and information to parents, schools and businesses. Knight has two boys with multiple food allergies and has seen the difference it can make when schools actively seek to build a culture in which children with allergies feel safe and included. One of her sons, who has a dairy allergy, had a frightening moment when someone dropped some macaroni cheese in his glass of water at lunch. Knight does not know whether they did this accidentally or on purpose but either way, it would have been much less likely to happen if the child who did it knew more about allergies. Knight speaks of the tiny changes that can make a huge difference, such as schools asking children to bring in a book not a cake on their birthday.
Helen Blythe has come to the conclusion that the best way to keep children with food allergies safe without leaving them “riddled with anxiety” is having “enough people in the school who get it and understand it”. The gold standard, she says, is not only having the right number of adrenaline pens and people trained to use them – although this is essential – but developing a culture where “all children want to support and protect their friends”. She cites the example of Benedict’s nursery, where one of his friends once tried to stop the staff from pouring his oat milk saying, “Ben can’t have that” because the packaging was different and the other child thought it must be cow’s milk. To keep children with allergies safe requires hundreds of small moments of care like this.
Benedict’s sister Etta will start school this September – a different one from her brother – and the Blythes’ hope is that her experiences will not be ruled by worry about her allergies. “You can’t live your life in fear,” Helen says. When Etta recently suffered an anaphylactic reaction after accidentally being served a cow’s milk strawberry drink from a coffee chain, Helen took her back the next week to buy one made with oat milk to signal she could still be confident about consuming food and drink outside the home. But, she adds, thinking about Etta going to school “is terrifying, I can’t pretend it’s not”. Sending an allergic child out into this world of rising allergens is a more extreme version of the anxieties all parents face when their child starts school. You want them to feel free to explore the world and all its joys without fear. At the same time, how can you possibly relax when danger lurks in a splash of the wrong milk?
