Key Points
- Sophie van Reijswoud is 15 years old and has been in hospital for months with a severe case of long Covid.
- She was healthy before contracting the virus but is now bed-bound, tube-fed, and cannot go to school.
- There is limited research into long Covid, particularly among young people.
In the early days of the COVID-19 pandemic, public health messaging said children and teenagers were not likely to be affected by the virus.
While they could contract the virus, they were simply "carriers", and generally asymptomatic, experts said.
Now, three years later, the family of a teenager with a devastating case of long Covid is desperate for answers.
Sophie van Reijswoud was 13 when she got the virus, and two years later, she is tube-fed and hydrated, vomits up to 30 times a day, and her gastrointestinal system is non-functioning.
The teenager from northern NSW is bed-bound and unable to walk due to constant dizziness and fainting from a condition called postural orthostatic tachycardia syndrome (POTS), which impacts her nervous system and movement.
"It's like a bomb going off in your life," Sophie's mother Erin Godwin said.
"Sophie was a very normal, functional 13-year-old girl, on the cusp of teenagerhood, and she's been unable to attend school for a year and a half."
Before getting COVID-19, Sophie was dux of her selective school year level, played competitive netball, and was healthy with no medical conditions.
Vaccines had become available to her age group shortly before she contracted the illness, but Godwin said she and her husband had not yet decided whether to vaccinate their daughter.
They did not think she was at risk of becoming seriously ill due to her young age and good health.
Sophie was an active teenager before contracting COVID-19 in 2022. Source: Supplied / Erin Godwin
"Long Covid is not a very well-understood condition; it took a considerable amount of time and finding the right practitioners for her to even receive that diagnosis," Godwin said.
"It wasn't properly recognised, and that had a considerable impact on her and us as a family unit and also on her capacity to achieve the care that she needed."
"If I said my child has cancer, people would understand, but her quality of life is akin to someone with that sort of level of illness, and that's not always properly understood and that's difficult."
They have spent tens of thousands of dollars on treatment and care, and Godwin has had to leave her job to care for her daughter, while her husband has taken on extra work.
Godwin said while many people consider the pandemic over, her family can't move on.
She described Sophie's case as catastrophic.
"What my daughter is experiencing is like a permanent lockdown in her own body," she said.
"People think that it will never happen to them or their child, and I thought that too, but it does."
How common is long Covid in adolescents?
The medical condition of long Covid is not widely understood, and even less so in younger demographics.
Associate Professor Philip Britton, clinician and infectious disease paediatrician at the Children's Hospital at Westmead in Sydney, said some studies have suggested up to 30 per cent of children could develop ongoing COVID-19 symptoms.
But he said these studies have had limitations and either asked broad questions about symptoms, did not account for changes in variants throughout the pandemic, or were done before the population was widely vaccinated.
Britton estimates the frequency of long Covid in children and adolescents is close to 1 per cent.
"The vast majority of children and young people who get COVID-19 will recover without any issues, however, in the people that are affected, it can be very burdensome on some of those people," he said.
He said post-Covid conditions in children and young people are more common in females, teenagers, and those with preexisting medical conditions, but causes remain unknown.
Britton says more data needs to be collected in Australia to understand long Covid and inform treatment and earlier intervention.
"We need to understand risk factors better so that we can better identify those people who are more likely and then intervene earlier in their illness course," he said.
"We still haven't achieved a sufficient capacity in the system yet, and I have a lot of empathy for people who are dealing with this, particularly families, and have found it very difficult to figure out who to see and how to get help."
Magdalena Simonis, a general practitioner and member of the Royal Australian College of General Practitioners Expert Committee for Quality Care, said it is not clear why some young people with no risk factors become seriously ill from COVID-19.
"We don't really understand why some people will react in the way that these people do, we don't know why it triggers all these other co-inflammatory conditions," she said.
"But we do know COVID-19 is a multi-system disease, it doesn't just affect your respiratory tract and it has been quite a complex beast to deal with."
She said the medical system had been "battered" by COVID-19, and more development is needed in infrastructure and systems to support patients.
"We are still adapting to dealing with long Covid, and our system at this point in time hasn't really acknowledged that there is such a large sector of the population that contract long Covid," she said.
"They need attention and support."
What are the COVID-19 vaccine guidelines for young people?
As of September 2023, people aged five to 17 with no risk factors are recommended to have two doses of a COVID-19 vaccine.
A booster dose is not recommended.
For those in the same age group with risk factors, the Australian Technical Advisory Group on Immunisation says a 2023 booster dose should be considered.
Britton said it's important to remain up to date with vaccine guidelines.
"If you're eligible for a dose of vaccine, please consider going out and getting it," he said.
"There are many people who, even though they've had doses of vaccine, are under-vaccinated compared to the recommendations that are out there at the moment."
