For kids with long COVID, "back to school" often means not returning at all

In January 2022, Jennifer Robertson’s now 11-year-old son, Fergus, developed long COVID, a condition in which the symptoms of COVID-19 linger for months or even years. Due to his symptoms, he missed nearly six weeks of school after his first infection. He’d be in and out of the classroom for the rest of the school year.

Robertson never knew how her son would feel day to day. After three months of daily fever spikes, red eyes, and chest pains, the family pulled him out of their school to be homeschooled for a year. There was hope when he returned to in-person school last year at a private, and more flexible, school.

But then he caught the virus, again. This year, as many kids returned to school, Fergus returned to home education. Robertson told Salon in a phone interview that this is to “both to catch him up on things that he needed help with or missed and to try to avoid the non-stop repeat infections that come from school."

But additionally, the lack of COVID-19 precautions in schools is a deterring factor to sending him in-person. “We feel we will never heal from this as long as schools have no ventilation, open windows, air purifiers, and policies that children and staff can come to school while actively positive with COVID," Robertson said, adding that she and her family feel “forgotten” as the 2024 school year begins.

“The days, months, and years are rolling by with no precautions from school,” Robertson elaborated. “All the while more children join families like ours every day, due to complete and utter negligence from those around us and the authorities who have the power to change things for the better.”

Robertson and her family are based in the United Kingdom, but the lack of coronavirus protections in educational settings follow an international trend. In 2022, schools across the United States started to relax their masking policies, making them “optional.” Today, seeing a kid wearing a mask in class is a rarity.

The U.S. Centers for Disease Control and Prevention changed their guidance earlier this year, now suggesting people treat COVID like other respiratory illnesses, such as flu and RSV. That means when a kid is sick with COVID, they no longer have to stay home in isolation for five days. All they have to be are fever-free for 24 hours. The change in guidelines eased concerns about absenteeism, which became a significant worry during the pandemic. Research has found that chronic absenteeism, or missing at least 15 days of school in a year, affects academic outcomes. However, the relaxed approach in schools and society is leaving kids with long COVID behind. 

“Schools must make it safe for all children that attend, whether they currently suffer from long COVID or not,” Robertson said. “Many children are potentially just one more infection away from developing the debilitating effects of long COVID.” 

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A study published in February 2024 estimated that up to 5.8 million children have long COVID. Recently, some health experts declared this a public health crisis among the pediatric population. In a more recent study, led by the National Institutes of Health’s RECOVER Initiative, researchers asked caregivers to tell them about the symptoms that their children or teenagers had been experiencing more than four weeks after a COVID infection. For some children in the study, that meant their symptoms lingered for three months after their infection. For others, it was up to two years. 

For many kids with long COVID, returning back to school means not attending school at all. 

“That’s because of the severity of the illness that they are living with, and also, in part, the lack of flexible and hybrid opportunities there are for education,” Sammie McFarland, the CEO of Long COVID kids, a UK-based, international non-profit that advocates for families and children with long COVID, told Salon. “In education, one of the biggest challenges is for educators to understand long COVID, and without that understanding, it makes it very difficult for there to be a good home and school relationship.”

For children with long COVID, McFarland told Salon she sees a lot of “breakdown” between schools and families due to the lack of understanding about the condition, which she believes stems from poor public health messaging. The impact is significant on the children themselves who want to be in school and miss their previous school lives. 

“The children tell us they miss their community, they miss being part of their school life, they miss their friends, and they miss feeling included,” McFarland told Salon. “The whole education system is really set up to achieve, and when the young person is not able to do that because health challenges take over, there's an enormous sense of loss, grief and disappointment.”

Long COVID Kids has put together a series of recommendations for educators to better accommodate children with long COVID. The recommendations include educators being flexible when health needs take priority over education. When children with long COVID are out of school, the organization recommends that educators maintain contact with the children and facilitate a sense of belonging to give kids a sense that they will be welcome back when they return. In the school, they recommend flexible timetables and providing kids with long COVID a calm environment when they need a break to rest. 

Alternative school options have been a saving grace for many long COVID families. Laura Covington’s son Matthew, who lives in Virginia, contracted the virus in January 2021. At first, his symptoms were mild. But a month later, Matthew started having chest pain, a rash, and body aches. At first, his school was understanding about his condition. But towards the end of that school year, Covington said, the school told him that his regular absence was a disruption. That was one of the few reasons they left that school. Today, he attends an outdoor school. 

“These kids are outside 60 percent of the day in all kinds of weather,” Covington said. “And that was favorable for Matthew, just mitigating the risk of any of the germs that typically float around schools.” 

When Salon spoke to Covington, they were on day 26 of the school year. However, Matthew had only attended for three and a half days. However, it’s not a problem for the school, Covington said. 

“They've really worked around his medical needs as well as his social and emotional growth,” Covington said. “And I think that's really important for schools to do, and we recognize that a lot of schools, especially public schools, are not doing that.”

But some are stepping up. For Robin Scott, based in California, she has been able to find a school that is accommodating to her daughter, Katie. After she and her family got infected with COVID in August 2021, Katie was in and out of the emergency room. Blood tests showed she had elevated markers for MIS-C, a rare but severe illness that can occur after a COVID infection. For the rest of the school year, the five-year-old struggled with various symptoms causing her to be in and out of school. Today, the third grader is in a supportive educational environment, Scott said. 

“Our school has been amazing,” she said. “Having that relationship with the school has been huge for my peace of mind, and for Katie's well-being, and she's got friends that are super supportive of her and understanding.”