Until recently, Wednesday Lynch was, by all accounts, a typical 12-year-old living in Gaston County, N.C.
Wednesday, a seventh-grader, was a cheerleader who enjoyed jumping on her trampoline and playing with the family’s dogs in her spare time.
Like many children her age, Wednesday had a lot of energy – always “bouncing off the walls, running around outside, jumping on the trampoline,” her mother, Melissa Lynch, recalled in an interview with Spectrum News earlier this year.
That was, until COVID-19 hit.
In September of last year, Wednesday Lynch tested positive for the coronavirus – 12 months later, she’s still suffering.
She has experienced a range of symptoms, from low-grade fevers and skin rashes to other, more persistent ailments – among them, headaches, brain fog and fatigue.
Wednesday Lynch is considered a COVID-19 “long-hauler” – someone who has continued to experience symptoms long after their original infection.
But now, after months of suffering and countless hours spent in doctors’ offices across the state, her family has hope that some relief could finally be on the horizon.
Wednesday is one of 2,000 children selected to participate in a massive, multi-year study from the Children’s National Hospital in Washington, D.C., and the National Institute of Infectious Diseases (NIAID), aimed at measuring the long-term effects of COVID-19 in children.
Funded in part by the NIH, the study – a three-year, $40 million effort – will examine long-term effects of COVID-19 and multisystem inflammatory syndrome, or MIS-C in young patients after they have recovered from their original infection.
Half of the children in the study are patients who tested positive for COVID-19, and the other half will be siblings or other children living in the home who were not infected, explained Dr. Roberta L. DeBiasi, the chief of infectious diseases at Children’s National Hospital and lead researcher for the study.
The latter will serve as something of a “control group” for researchers as they work to determine any long-term health risks to children infected by COVID-19, and whether some children are more susceptible than others to long COVID, DeBiasi said.
During the three-year period, “We’ll be looking at pulmonary outcomes … we’ll be doing cardiac outcomes… we’ll be looking at their neurodevelopment outcomes because some children are very young when they are infected,” she said.
Ultimately, “What we hope to find from this study, and provide to our patients, is access to a multidisciplinary evaluation,” DeBiasi said.
“And by that what I mean is, each child is a little bit different. So it could be — for your child, if they're having long term symptoms, [where] pain is the main issue — we have experts in pain medicine, with very novel and innovative ways to characterize the pain, quantify the pain, pinpoint where it is, and use interventions that will specifically help that person," DeBiasi continued.
“On the other hand, there may be a child where the anxiety and mental health issues are much more of a prominent symptom, they don't have pain," she said. "But. again, because we're a large children’s medical center, we have a whole cater of experts that can focus specifically on that child's needs."
“So I think the study is going to provide families a lot of resources that they may not get out in the community or with a single or a smaller combined adult pediatric institution. And it's also going to help us evaluate these kids in a much more systematic way, because we have access to all of these resources.
Studies suggest that adults are more likely to be impacted by so-called "long COVID" than young people, but children are not immune.
A recently published U.K. study found that roughly 4% of young children and adolescents infected with COVID-19 had symptoms that persisted more than a month after they were infected.
And in July, President Joe Biden announced that long COVID can rise to the level of being classified as a disability; thus entitling sufferers to school or workplace accommodations under the Americans with Disabilities Act.
Asked whether more resources will be needed down the road for sufferers of long COVID, DeBiasi said it’s still too early to know. “I don't think we know yet what percentage of folks will need this more extensive evaluation,” she told Spectrum News. “And that's the point of the study.”
“I do agree that as we learn more about long COVID, in both adults and kids, there may be a need to be more, more centers that can accommodate the volume of patients. But this is all evolving in front of our eyes,” she continued. “So we'll just have to see how these things go.”
More than 5.5 million children in the U.S. have contracted COVID-19 since the start of the pandemic, according to the American Academy of Pediatrics, and more than 21,000 children have been hospitalized from the virus.
The highly contagious delta variant has also caused cases to increase “exponentially” – and after a decline in early summer, the U.S. recorded a million new COVID-19 cases in young people between Aug. 5 and Sept. 16.
“I'm hoping that this will, you know, provide care across the nation. Not just having to drive three or four states across, to even be looked at, to figure out, you know what's going on,” Wednesday’s mother, Melissa Lynch, told Spectrum News in an interview.
On Wednesday, American Association of Pediatrics President Dr. Lee Beers appeared on Capitol Hill to testify about COVID-19 rates in children, as well as the highly contagious delta variant, which she said has caused an “extraordinary rise” in case numbers in children.
“While COVID-19 infection is generally not as severe in children as adults, children have not been spared by the virus,” Beers said. “Lower risk does not mean no risk, and many children have become very sick from COVID-19.
Currently, the COVID-19 vaccine is available to children ages 12 and over. But that could change soon – on Monday, Pfizer said a new report found that its COVID-19 vaccine is both safe and effective in children ages 5 to 11, and plan to seek emergency authorization in the U.S. in the coming weeks.
In an interview this week, Melissa Lynch said she hopes the study at Children’s National Hospital will help provide a treatment or solution for patients like her daughter down the line.
And in the meantime, she said, she it will help secure additional funding for researchers and doctors studying long COVID.
“I hope that they will at least figure out if it's going to be like an autoimmune disorder, or if it's going to be a post-viral type thing, that turns into this, or that,” Lynch said.
“[Also], the damage,” she added. “You know, what is it going to affect down the road for these children, as far as their systems go? Is it going to shorten their life? Is it going to cause some severe problems 20 years down the road? I’m hoping that – I know it takes time, research does – but I’m hoping they do discover answers.”
What does Wednesday hope to gain from the study?
“I think she just wants it to end,” her mother said. “She wants her life back.”
The Associated Press contributed to this report.