The Times, 6th April 2021 - ‘We came so close to losing him’ — the trauma of having a child with severe allergies

For the parents of children with severe food allergies, life is fraught with constant vigilance and, a new study says, traumatic disorder

Stephanie Hulme with her eight-year-old son, William

When Stephanie Hulme’s son William was three he suffered a severe anaphylactic shock. They were in a coffee shop and William was drinking a favourite smoothie that he had enjoyed numerous times before but this time it contained flax seed. He turned pale and complained that his tongue felt as if it had hair all over it.

They drove home and William fell asleep in the car — another sign, although they didn’t realise it then, that he was suffering an allergic reaction. He vomited as they walked through the front door and when his parents peeled off his clothes they found that he was covered in hives. “He started coughing and we realised something was happening. So he was rushed to hospital, where he went into anaphylactic shock,” Stephanie says.

William recovered after several hours but this was just the start of living with allergies for him and his family. Now eight, he is allergic to peanuts, tree nuts, mustard, sesame and flax seed and is contact-allergic to dogs.

He has had three further, milder reactions to things he ate but the terror of the first reaction hangs over the family. “It was awful. I still can’t really talk about it in proper detail without getting upset,” Stephanie says. “You have no idea what’s going on. I remember being down on my knees and just praying that he’d be OK. We didn’t realise at that time that allergies could kill. And he’s gone on to develop severe allergies, so if he digests them at any given point we are looking at severe anaphylaxis. It’s five years later and he’s a happy, healthy, lovely little boy. But how close we came to losing him haunts you and you know that that happening again is a possibility. It’s really hard to deal with.”

Between 6 and 8 per cent of children have a food allergy, with the most common causes being eggs, milk and peanuts. Research by the University of East Anglia last month shed light on the effect this has on the parents of children with allergies: 42 per cent reported trauma that met the criteria for post-traumatic stress symptoms.

Stephanie, from Cardiff, describes her family living in a state of constant vigilance out of fear that William will suffer another attack. “You’re thinking everything is a threat. What happens if I’m not there when he eats that piece of cake? What happens if this hasn’t been labelled properly? What happens when he’s older and wants to go to university? What happens if he starts dating and someone eats something that he’s allergic to and gives him a kiss? It’s continuous but you’ve got to slap a smile on your face and kind of stay positive for them.”

The unease experienced by the parent of an allergic child can increase as their child’s anxiety develops. Stephanie recalls kissing her son goodnight and being questioned by him on what she had for dinner. She had eaten pesto that was labelled “may contain nuts” and had to explain that he couldn’t eat it. “A couple of minutes later I heard someone in the bathroom upstairs. He was scrubbing the side of his face over and over and over from where I kissed him,” Stephanie says.

She contacted parents of other allergic children. “It was a kiss goodnight, something so simple. I had to reach out to the other mums because I couldn’t cope. I couldn’t get my head around that.”

As William has got older he has asked further questions. “He’s asked us if he can die from his allergies and we had to have that discussion because we wanted to be honest with him. He needs to understand the severity of the issue and how we’re trying to keep him [safe], but one day it’s his responsibility. Afterwards I snuck out and cried in the car,” Stephanie says.

Family life is arranged carefully. William needs an EpiPen wherever he goes in case he has a reaction and needs a dose of adrenaline. He doesn’t go to birthday parties without Stephanie or her husband, Matthew. He goes on playdates with one friend whose family have educated themselves to be able to respond if needed. “It’s my issue with controlling the situation. I need to be 100 per cent sure that if he does go into anaphylactic shock those parents know how to deal with it before I can actually let him go,” Stephanie says.

The EpiPen doesn’t offer complete reassurance. “Of course, you’ve heard of cases where it hasn’t worked,” Stephanie says. “You can take every single precaution but when you go out to restaurants or a park there’s always the possibility, there’s always the chance.”

Stephanie, whose two other children, aged five and one, don’t have allergies, tries to hide her worries from William. “You don’t want to let it show to your child. You want to continuously be, ‘Everything’s fine. Your allergies aren’t going to stop you living the best life and we’re going to go on adventures.’ But deep down you’ve got to be three steps ahead just for your own anxiety. You’ve got to make sure: ‘Right, I’ve got the wet wipes, I’ve got the EpiPen, I’ve got the antihistamine, the hospital is this far away. Where are we going? What are they eating? Will he have a snack? Is it safe?’ There’s a checklist all the time.”

The number of people admitted to hospital for severe food allergies has tripled over the past two decades, according to research published in The BMJ this year by experts from Imperial College London. The proportion who have died has declined, possibly because of better awareness of how to treat reactions.

In the 20 years to 2018 more than 100,000 people received hospital treatment for severe allergic reactions — 30,700 because of food allergies. The research found that 152 deaths were attributed to severe allergic reactions to food in that period, 46 per cent of which were triggered by nuts. It is estimated that fewer than ten people die because of food allergies each year. Cow’s milk is the most common cause of fatal reactions in children, responsible for just over 25 per cent of deaths in children — 17 out of 66 deaths.

In 2018 Clare Bristow’s daughter Sadie, aged nine, had a fatal reaction during a family picnic to celebrate the first birthday of her sister, April. Despite an EpiPen being administered, she went into cardiac arrest in hospital and died.

Sadie, a brilliant tennis player who was ranked No 1 in the UK in her age group and had won numerous tournaments, was very allergic to dairy products and hazelnuts and had had previous attacks. The family were meticulous about preparing her food and it is not known exactly what triggered the attack.

“I’m glad I don’t specifically know what food might have triggered it because then you can torture yourself: ‘Perhaps there was something that was contaminated in the bread or the ham I bought.’ Then you’re battling with huge companies and it’s probably not a very healthy way to live going forward,” Clare says.

Clare Bristow and her daughter April, three

April, now aged three, also has allergies, to milk, egg, peanuts, hazelnuts, other nuts and sesame; the recent research into the post-traumatic stress symptoms parents experience came as little surprise to Clare.

“There are an awful lot of anxious parents, understandably, and that completely resonates,” she says. “I know that I do have post-traumatic stress syndrome. That’s because of what happened with Sadie and obviously that’s an ongoing battle, especially now with April. But you don’t have to go through that level of trauma to be completely overwhelmed with caring for your child, especially when you’re starting school or preschool for the first time. It is incredibly difficult to try to have a normal existence.”

April will start school in September and Clare will go in before then to meet staff, who knew Sadie, and the school cooks. “It doesn’t necessarily mean that everything’s going to be al lright. I still get that anxiety of entrusting her [to other people]. Do I give her school dinners? Does she take packed lunches? Is she going to perhaps feel she is different? Yes, we are I suppose a little bit planned and organised but on the other side I feel like I’m a new mum again, having to deal with it from the start.”

April had a severe reaction in January; adrenaline was administered and she was taken to hospital in an ambulance. “It was a complete shock and extremely terrifying,” Clare says. “The mental exhaustion that comes with it is quite high. I could lose her in the same way and that fear is incredible.”

April has an older sister, Charlotte, who is 14. “Charlotte’s coped with it incredibly well but she’s on tenterhooks when we’re out,” Clare says. “Obviously it has affected her quite a lot losing her sister and now seeing April go through similar reactions.”

Clare has set up a support group for parents of children with allergies in Kent, where the family live. “When you deal with your child having allergies you do feel very lonely, but knowing there are other parents that have the same worries is comforting,” she says.

Support for parents is also offered by the Natasha Allergy Research Foundation, which was set up by Tanya Ednan-Laperouse and her husband, Nadim, after the death of their daughter, Natasha, in 2016. Natasha died after an allergic reaction to sesame seeds in a Pret a Manger baguette. There was no allergen information on the label of the sandwich.

The family successfully campaigned for “Natasha’s law”, under which businesses must provide full lists of ingredients on prepackaged food from this October. The charity funds research into allergies and provides information for families.

“What shocked us after Natasha’s inquest was that people started contacting us and wanted to offload all the problems that they were having,” Tanya says. “They really sympathised because they could see what had happened to us was their biggest fear. It was just such an outpouring.”

While fatalities are rare, there remains great uncertainty for parents. “Deaths are low but the problem is that no one knows why some people die and others don’t. And we know that A&E admissions for anaphylaxis tripled. So I think there’s this real fear. When you see anaphylaxis and you see either an adult or a child not being able to breathe, you’re actually watching someone suffocating and it’s a very, very frightening thing. Hence the post-traumatic stress. What’s needed is a lot more support for people who have to live this kind of life every day.”

It is estimated that between two and three million people in the UK have a food allergy but the Natasha Allergy Research Foundation says that there are not enough trained allergists in the country.

Tanya’s family witnessed Natasha’s first allergic episode when she was a baby of six months and reacted to a small amount of banana. Her lips swelled up until they split. “She couldn’t breathe, she was screaming, it was just awful. The second time, when she had formula milk, she looked like she’d been dropped into a vat of hot oil. Her skin was raised and bright red and she was screaming. So that on its own will absolutely have a lasting effect because that becomes your worst dread,” Tanya says.

“And even if your child hasn’t had an anaphylactic reaction but you know there is a possibility that they could because you’ve been told they are seriously allergic to an ingredient, you dread it. Worrying about something can often be worse than actually having to deal with it because it never leaves your side. You’re in a constant state of hypervigilance but trying to lead a normal life because the last thing you ever want to do is to actually become someone who micromanages everything. Because that’s no way to live a life either.”