'The doctor told me there's no such thing': The children living with Long Covid every day

Dylan and Liliana face the long-term effects of Covid-19.
  • By Digital Content Producer Amani Hughes

Liliana Jackson’s Covid symptoms became so severe last year, she faced Christmas Day in A&E.

But instead of being treated with sympathy and understanding by the doctors she met that day, the 16-year-old was told “there’s no such thing as long Covid in children”.

The teenager had spent the car journey to the hospital vomiting, in severe pain and was so ill on Christmas Eve with nerve pain that she couldn’t even lie down. To then be told by a medical professional her condition did not exist was “really sad and also quite scary”, she told ITV News.

“You feel so unwell, I did feel like I was dying, so it was definitely a very scary time, and having a doctor say that to you, not even run a test, or give you medication for the pain… they had no idea what was going on,” she said.

Liliana contracted Covid-19 in September and still suffers with symptoms months on. Credit: Gail Jackson

Liliana is one of around 74,000 children suffering with the long-term debilitating effects of coronavirus, according to the ONS. The data shows that 13% of under 11s and about 15% of 12- to 16-year-olds reported at least one symptom five weeks after a positive Covid-19 test.

She first contracted coronavirus in late September – with the usual symptoms of a persistent cough and a loss of taste and smell. But by October 1, she was in hospital with a rash all over her body and swollen lymph nodes.

Since being discharged, the symptoms not only continued but worsened – Liliana experiences frequent headaches, nausea, fatigue, brain fog, severe nerve pain - where it hurts to touch her skin - and chest cramps.

Asked which symptom is the most severe, she says: “It’s probably fatigue, because it gets to the point where I could sleep 15 hours and wake up feeling the same amount of tiredness as I did when I went to sleep, I always feel exhausted.

“Nausea is pretty bad, I can’t really eat without feeling ill and the headaches affect my concentration – looking at screens.”

Long Covid has had a knock-on effect on Liliana’s school life - her grades slipped, she had to drop two GCSEs and was given extra time in tests.

Liliana's mum, Gail, explains the only reason she did not have to repeat a year was because prior to Covid she was a high achiever.

“It’s definitely tough, it takes a toll on your mental health because you feel very confined to your house,” Liliana says.

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'I thought it would last forever' 

Eight-year-old Dylan had a similar experience after contracting the virus early last year.

He became ill with Covid in February, with stomach pains, night sweats, bone ache, and headaches, among with a plethora of other symptoms, but things did not improve for Dylan, and after three weeks, his symptoms had become more severe. He also developed breathlessness, involuntary shaking, rashes and was sick every day from February to October.

Dylan told ITV News: “I thought I was going to get better and then as the weeks went by, I thought this would just be my life forever.”

Dylan in January 2020 - one month before he became ill with coronavirus.

Thankfully, things have improved for Dylan and he started recovering by October and he now “counts the good days” instead of the bad.

“We’ve got through the worse of it now, compared to where he was,” Mum Heidi explains.

Nevertheless, Dylan is not symptom free and the eight-year-old still experiences breathlessness around once a month and the sickness, leg pains, bone ache, headaches and stomach pains have continued – although less severe.

What Heidi wants to know is what the long-term effect of this illness has been on her child’s mental and physical wellbeing.

What is known about Long Covid in children?

Despite being more than a year into this pandemic, there is a lack of understanding and research into the long-term effects the virus has on children.

Long Covid clinics have been set up, but they are for adults and over 16s only. Thankfully, Liliana was admitted to one, however the support offered is not as comprehensive as she had hoped for. It is focused on managing symptoms with cognitive behavioural therapy (CBT) and physiotherapy.

Gail says: “There’s no exploration of what might be going on internally, there’s nobody kind of overseeing it, they are responding to the symptoms rather than trying to understand it.”

For Heidi, she felt dismissed and ignored by the doctors when Dylan first became ill – he was examined and then sent away without being tested properly.

One of the symptoms of Long Covid is rashes, which Dylan developed.

“The problem you have got is you have a paediatrician that doesn’t know about long Covid, then you go to a heart specialist or cardiologist and no one is joining all the dots together, you need someone who specialises in this, who knows these symptoms, who can support these children. We need physical and mental support for them, because they’re going through a lot mentally as well,” Heidi says.

What is needed is a joint up holistic and medical approach to long Covid, Gail explains.

“I think that everybody is waiting for research, there has been some researching funding released for long Covid, which includes children as well, they need to bring together all of the knowledge, as this is a global issue. Just like the Covid vaccine, I’m hoping everybody collaborates to get an understanding of what this is.”

The one place where both found solace and understanding was in the Long Covid Kids group, co-founded by fitness instructor Sammie Mcfarland after her daughter developed long Covid.

The group now supports just under 3,000 children with long-term symptoms post Covid-19 – a sounding board for the help on offer for children, sharing symptoms and advice and a refuge for families to know they’re not alone in this journey.

“Last year was a horrendous year, and not having the ability to have someone take note, you think your child is the only one going through this, you think you’re going mad, and you find this group and find unfortunately that there’s other people going through the same scenario as you, and you get a weird sense of comfort because you realise you’re not going mad,” Heidi explains.

When asked about the support available for children suffering with long Covid, a Department of Health and Social Care spokesperson said: “The government rapidly provided specialist care for acutely ill Covid-19 patients at the start of the pandemic, and we have matched that speed in our support for people with long Covid.

“We are continuing to improve our collective understanding of the impact long Covid has on people of all ages – making sure we deliver the best and most bespoke support possible to affected individuals.

“To help people suffering with long Covid, we have opened specialist NHS clinics across the country which provide assessment for adults, children and young people alike.”

For Liliana and Dylan they are looking towards the future now.

Liliana is looking forward to a long summer, one where she can hang out with her friends and take it slow and recover before starting her A-Levels in September and for Dylan he now describes himself as a “nine and half out of 10” whereas during the worst of long Covid he was “one out of 10”.

But for the thousands of other children continuing to suffer the harsh, debilitating effects of long Covid, it looks set to be a long, hard year ahead, without the proper support available for them.