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Childhood, interrupted: 12-year-old Toby’s life with long Covid | Long Covid

Childhood, interrupted: 12-year-old Toby’s life with long Covid | Long Covid
Childhood, interrupted: 12-year-old Toby’s life with long Covid | Long Covid

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It is a few days after Arsenal have beaten Spurs and I’m discussing the game with 12-year-old Toby. A huge Tottenham Hotspur supporter, Toby is also magnanimous in defeat. He admits that, despite a major second-half wobble, Arsenal (my team) are playing better football at the moment. Davies couldn’t handle Saka, Son has gone off the boil, only Romero came out with any credit.

I’m enjoying talking football with Toby. He is clearly incredibly knowledgable as well as passionate about it. It’s zero surprise to learn he has three fantasy football teams on the go.

Toby loves playing football, too. Or loved playing. A steadfast defender and slide-tackle specialist (never dirty, though), he captained a local youth team. But Toby hasn’t played football for two and a half years.

We’re sitting around the kitchen table in his east London home with mum Sarah, dad Simon, tea and custard creams. (They asked us not to use their surname in order to protect the children’s searchable presence online.)

The doors are open, spring is flooding in and the garden’s looking gorgeous. Since giving up work last year to look after Toby, Simon has spent more time on horticulture; he even did a course. They have an inflatable pool out there. Toby finds cold water therapy beneficial, and Simon – now mostly a carer as well as an (unqualified) teacher – will often get in, too, for moral support.

Toby has an older sister, Isabel, 15, who also has long Covid, although she’s now doing better; they reckon she is about 85% recovered. She’s at school today (and anyway, she’s quite private and way too cool to want to be in the paper with her family).

Toby’s having a good day. He even went to school. “I haven’t really been in for the last two or three months, but the last two weeks I’ve gone in during the lunchtime. Not to go into any lesson but for form time.” What was it like? Was it good to see people? “It was amazing,” he smiles, especially to see his best mate, Louis, even if he does see Louis most days online – they play Minecraft together.

Toby got Covid in January 2022 and hasn’t been well since. His symptoms include pains, crushing fatigue, dysautonomia (racing heart on standing), often the inability to walk more than 50 metres or stand for long (they now have a wheelchair). And worst of all is post-exertional malaise (PEM), so that any activity he does manage – physical or mental – will come back and knock him out later, for days or longer.

When Toby didn’t get better, he was referred to an NHS long Covid clinic. They said he would get better, although it might take a few months. “No one says that any more,” says Sarah.

Isabel was referred, too, although her symptoms were different – it was more about chest pains and nausea. To begin with she was worse than her brother. “There’d be times when we’d be like: ‘Neither child has gone to school for a month,’” says Sarah. Simon remembers one good day: “I sent that text message to you, saying: ‘They’re both at school at the same time!’”

In the latest Office for National Statistics survey, published in April, 111,816 children (aged three to 17) in England and Scotland were estimated to be suffering from long Covid during the four-week period ending 7 March. More than 20,000 of these children have found their ability to undertake day-to-day activities has been “limited a lot”.

Dr Binita Kane is a Manchester-based consultant respiratory physician with a special interest in long Covid. Her experience comes from being a doctor treating patients with long Covid (including Toby and Isabel) and also being the mother of a girl with long Covid. She says long Covid in adults and children seems to be similar. “I think the main difference is in how it affects the nervous system. Because in kids, you’ve got a developing brain, so their brain manifestations tend to be a little bit different. But other than that … I would say there are more commonalities than differences.”

While there is limited data suggesting that ME and chronic fatigue syndrome may have a genetic link, “we simply don’t know in long Covid,” she says. Anecdotally, however, “I do see lots of families with more than one person affected”.

Toby was improving last year, getting into school for a lesson a day. But then he got Covid again in the autumn and had another crash, which coincided with starting secondary school. So, apart from a few managed drop-ins like this morning, he has so far missed out on the first year of big school. “He’s always been a really sociable kid,” says Simon. “He makes friends easily; he hated lockdown.” Yet here he is again, at home.

Toby with Sarah and Simon. Photograph: Sarah Lee/The Guardian

“The rest of the world has moved on and left us in a hellish perpetual 2020 lockdown groundhog day,” says Sarah. The school sends work, Simon helps. An accountant, he’s fine with the maths, although Toby is pretty self sufficient with that. They’ve done some geography together, a bit of history. “We did William the Conqueror, didn’t we, that was fun.” Toby does a look that might mean: “Was it, Dad?”

They don’t do too much, two or three 10-20 minute sessions a day. “For a long time we worried about Toby’s education,” says Simon. “Then as time’s gone on we’ve decided what’s important is Toby’s health. So we try with the education and if you get a little bit better, we’ll get even more done.”

The school has been good – understanding and accommodating. The local authority less so. The family got an official letter saying if they didn’t take steps to improve school attendance immediately they might be taken to court. “I was fuming!” says Sarah, and not just from the point of view of her own family. “Yes, it was irritating for us, but the fact that the system is set up where it seems OK to send letters like that out to families in crisis for whatever reason, whether it’s ill health or whatever it is, just seems so misguided. I can’t think of any situation where that kind of letter would suddenly solve the issue of a child not being at school.”

We’ve been chatting for half an hour by now, and Toby goes off for a rest.

Sarah and Simon talk about how else Toby has been affected. The sadness, the sofa-thumping fury, the isolation. And all the things, apart from education, he should be doing but isn’t – walking to school with friends, afterschool clubs, games and gossip, playdates, birthday parties, family get-togethers, swimming. Missing out on childhood, basically. And of course, just as importantly, missing out on football. Simon remembers him crying out when he first got sick: “I just need football!” I also have a football-obsessed 12-year-old and I can hardly imagine what taking that – and the friendships and camaraderie that go with it – away would do to him, let alone all the rest of it.

Long Covid has, Sarah and Simon say, affected every aspect of family life. Simon gave up work, to look after Toby, but also because his own mental health suffered. “I couldn’t focus, I got very anxious. From the crushing heartbreak of carrying Toby emotionally and seeing him physically pained every day.”

Yet they consider themselves in some ways to be lucky. English is their first language, they are educated, they can argue their case (when they get a threatening letter from the local authority, for example). “We’re not afraid to challenge the system and not take no for an answer,” says Sarah.

They are fortunate, too, because of their financial situation. They took a heavy hit when Simon stopped work and have since applied for disability living allowance for children (they don’t know whether they’re going to get it). But as Sarah has a well-paid job working for a financial services firm in the City, they’re coping. They can afford a family weekend away in Margate. “The fact that we can do that, even if Toby only left the Airbnb once or twice, at least it was a change of scenery,” says Sarah. “We can go and buy a wheelchair, we can have Simon at home all the time. But if you’re a single parent …”

Crucially, they have been able to fund private health care. “Which means at least one child of ours is doing much better than lots of children out there.” Both Isabel and Toby have been treated by Dr Kane alongside a paediatric cardiologist. Isabel has made improvements since receiving blood thinning medication, on advice from the cardiologist, to inhibit “microclots”, which they believe stop oxygen getting around the body as it should and could be one reason behind some of the symptoms of long Covid, including severe fatigue and pain.

Kane has experience of the issues the NHS has with long Covid from the point of view of both a doctor and the mother of a patient. “Even from the privileged position of being somebody working in a big teaching hospital with all the contacts in the world, I still couldn’t get the help my daughter needed.”

She says that the 2 million people struggling with long Covid in England and Scotland have created a massive challenge for the health service. The model for post-Covid services was set up in 2020, and in terms of scale and pace the UK was ahead of the game then. But things have moved on and the NHS hasn’t kept up. “The NHS is a juggernaut,” Kane says. “It cannot change things in a rapid way unless you put the weight of everything behind it, like we did in acute Covid.”

Toby, celebrating his football team’s first ever victory in January 2022. Eleven days later he tested positive for Covid.

What there is at the moment is disjointed and slow. Patients should be getting ongoing support and rehab, says Kane. But “the way NHS funding is structured, it’s only really paying the hospitals to be a triage point and send people off to specialist clinics. If you’re a physician wanting to treat the whole person, the funding isn’t set up like that.” She does treat long Covid patients the way she thinks they should be treated, but at the moment this is only possible privately.

Because Sarah and Simon can afford it, one of their kids is getting better. Not only is Isabel attending school, she is on track to do well in her GCSEs. Plus she’s got her teenage life back; the other day she went to ice skating with friends.

Toby, however, still hasn’t made any dramatic improvement. Sarah and Simon say they don’t so much want sympathy but change. “There was a huge focus on mortality in the early days of the pandemic, and rightly so,” says Sarah. “But now there seems to be no focus on morbidity. Why is my child and everyone else affected not important?” She’s looking not just at the government but also at me, the media, and its failure to keep it topical, probably because of “a psychological need to move on. And yet we are stuck.”

The charity Long Covid Kids has been a lifeline for the family. “It has helped in two ways: advocating with one voice for awareness, understanding and action; and two, connecting us with people who are going through similar challenges. We are out of kilter with the rest of society.” Sarah would like to see the long Covid charities, which operate on shoestrings, granted funding to put forward recommendations for action.

The elephant in the room is reinfection. And it would be better if that room – which might be a classroom – had a Hepa air filter. Air filter machines have been shown to cut Covid-related sick days by more than 20%. See also: testing. “Schools and health settings aren’t encouraged to test; pupils and staff are even advised to come in if they feel OK. We know that reinfection is fairly catastrophic for Toby.”

Toby re-emerges. He seems tired, but is as charming and polite as before. “When you have a good day, you feel hopeful,” says Simon. But often they don’t feel hopeful. “We do worry that Toby is a bit stuck.”

A couple of days later I’m back in touch with Sarah and Simon, by email. I meant to ask them for a pre-Covid photo of Toby. They tell me he has had a big crash since our interview: heart rate variability right down, resting heart rate up, he’s floppy, on the sofa, not doing much.

I feel responsible – the interview was too much for Toby. “We thought he was well enough to do 20 minutes of school AND a chat, but we were wrong,” writes Sarah. “We have to make these micro-decisions every single day and we’re never going to get them all right. We have to not beat ourselves up when we don’t. His symptoms seem to be changing and we’re completely stumped as to what’s going on now.”

Simon sends a photo. It was taken immediately after Toby captained his team to their first ever victory in January 2022. “Eleven days later he tested positive for Covid and has never yet regained his health.” It’s a lovely picture of nine-year-old Toby: muddy, victorious, joyous. And it’s clear not just that he needs football back, but that football needs Toby back, too.

Do you have an opinion on the issues raised in this article? If you would like to submit a response of up to 300 words by email to be considered for publication in our letters section, please click here.

This article was amended on 12 June 2024. Text was added to clarify that a paediatric cardiologist has also been involved, alongside Dr Kane, in Toby’s care and treatment.

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