There’s a long list of activities that 9-year-old Emery Blackburn just isn’t up to anymore, like twirling on the monkey bars at recess, racing her friends or competing in sports. Sometimes she has to sit out P.E. class because her chest is tight and she feels nauseous.

“It’s not very fun because you’ll see other people playing sports and doing activities that you just can’t do, and that makes me feel just not very happy,” the South Jordan fourth grader tells a reporter when asked about being among the Utah children and teens with what’s known as long COVID-19, symptoms that linger long after the initial illness.

Don’t forget COVID-19 long-haulers: ‘This isn’t going to just go away’

Emery first became ill with COVID-19 in late July 2020, the same time as her mother, Ashley, who also suffers from long COVID-19. Ashley Blackburn said her husband, Dennis, was the first in the family to get the virus, but he and son, Louis, 3, only experienced mild, cold-like symptoms for a short time, and daughter Opal, 5, never got sick.

For both Emery and her mother, the illness was severe and so are the aftereffects.

“It was very scary. Most of the time it was my stomach, like super nauseous,” Emery said, describing her weekslong bout with the coronavirus as the sickest she’s ever been. But the additional symptoms she continues to feel are tough to take, too. “It’s hard to breathe. I get dizzy sometimes. My head is like I’m about to faint,” she said.

Her friends are understanding, Emery said.

“They’re actually really good. They ask if I’m OK and they’ll give me hugs and stuff. They’ll comfort me and make sure I’m OK,” she said.

Still, it’s hard to sit on the sidelines and be one of the few kids at South Jordan Elementary School wearing a mask to class.

“I don’t know any other kids my age that have COVID. It’s not really fun to be the only person and not have anybody your age who knows what it’s like,” Emery said. She said she’s been feeling well enough lately to bounce a bit on a trampoline and kick a ball around, but still worries about whether the illness will ever be behind her.

“It doesn’t make me feel very happy because you never know how long it could go on,” she said. “It could be a permanent thing, for the rest of my life. Or it could just be temporary.”

Emery Blackburn, 9, practices piano at her home in South Jordan on Tuesday, Sept. 14, 2021. Emery and her mother, Ashley, have both experienced long-haul symptoms since the family had COVID-19 in July 2020. | Spenser Heaps, Deseret News

One in 10 children may get long-COVID-19

More than 62,000 Utah children 14 and under have contracted COVID-19, according to the Utah Department of Health, accounting for about 12% of all cases. Just over 500 in that age group have been sick enough to be hospitalized, and two Utah youths under 18 years old have died from the virus.

Nearly 101,000 Utahns may be among the 11.1 million Americans with the varied symptoms identified with long COVID-19, including neurological and cognitive issues, shortness of breath, fatigue and pain, according to new estimates by the American Academy of Physical Medicine and Rehabilitation reported by Becker’s Hospital Review.

It’s not clear how much at risk Utah children and teens are of suffering symptoms beyond their bout with COVID-19.

“Long COVID in children really hasn’t been adequately studied, so we don’t know exactly,” said Dr. Andrew Pavia, chief of the division of pediatric infectious diseases at University of Utah Health and director of hospital epidemiology at Intermountain Primary Children’s Hospital in Salt Lake City.

Pavia said there are studies that suggest 40% of young people will still have symptoms two months after their initial infection, while others say that number is closer to 4%. The best estimate Pavia said he’s seen is that 1 in 10 children who get COVID-19 will end up with a long version of the virus.

“We need to start not pretending that it’s OK for kids to just go out and get COVID,” he said, adding that not taking preventive measures against the virus is “betting that most kids will have a mild illness and won’t get long COVID. Because if you bet wrong, that’s your child who suffers.”

What parents need to know about COVID-19 vaccines for children

Ashley Blackburn said her daughter has good days and bad days.

“She is doing OK. Like, kids are so resilient,” Blackburn said. “On the days that she doesn’t feel good she can get emotional and cry. You know, she’s just like, ‘As a kid, I’m not supposed to be doing this. I should be able to do sports.’ So she does get emotional and sad about it for sure.”

Parents need to understand the risk their children face, she said.

“It is a big deal and you’re taking a chance of your kid getting very sick. They can develop long-haulers, like Emery has. Or they can end up in the hospital,” Blackburn said. “I just think people are naive thinking that disease is not going to affect children because it certainly is.”

Arabella Bellows, 12, of West Jordan, battled COVID-19, is pictured at Primary Children’s Hospital in Salt Lake City in December 2020. Arabella developed what sometimes is called “COVID fingers,” a red or purple rash on patients’ feet or hands from the virus, which resulted in painful swelling. | Brandy Fischer

‘Learn from our trauma’

Recently, 12-year-old Arabella Bellows rated her pain from post-COVID-19 issues as “probably 4 to 5” on a scale of 1 to 10. Usually, her pain can drop as low as a 3, but that day, she said, “My feet are really sore. And my fingers and toes, they just ache, ache all the time. That’s the one pain that really never goes away. ... It’s just always there.”

While some children developed a red or purple rash on their feet or hands from the virus that’s sometimes referred to as “COVID toes” or “COVID fingers,” the discoloration that first appeared on Arabella’s toes and fingers after her late summer 2020 bout with the disease developed into painful swelling.

“The best way I could put it is cramped, like how it just hurts to move it. The most pain is in the knuckles,” the West Jordan seventh grader said. “Mainly my fingers, only like once in my toes, my fingers get swollen. Sometimes I get really swollen. ... My joints ache a lot.”

Arabella said she didn’t know much about COVID-19 until her grandfather, who lives with the family, was stricken with the virus and “things got bad” for him, although he recovered without any aftereffects. Soon, she said she was sick with what felt like a cold, a runny nose and a sore throat.

Testing positive for COVID-19, Arabella said she was “slightly scared but I was also a little sad. I don’t know why. I just didn’t want COVID.” The virus “wasn’t too bad,” she recalled, until the rash and swelling started, accompanied weeks later by pain that made it “hurt to do anything,” along with fatigue and shortness of breath.

Arabella Bellows, 12, of West Jordan, battled COVID-19 from 2020 into 2021. Arabella developed what sometimes is called “COVID fingers,” a red or purple rash on patients’ feet or hands from the virus, which resulted in painful swelling. | Brandy Fischer

For a while, Arabella said she did little more in a day than “getting up to get a snack or drawing on a piece of paper in bed.” Physical therapy over the past year has helped, but Arabella said she still runs out of breath easily and can feel “like my muscles are pulling apart.” Sometimes, she’ll fall when she tries to stand up.

Still, Arabella was animated while talking about starting another year of remote learning alongside her sister, Sophia, 10, and younger cousins. She explained how her online drama class worked but said she’s missing what would have been her first year at Elk Ridge Middle School — and that her at-home schoolmates can be a handful.

But just days later, Arabella was the sickest she’d been for some time. Her mother, Brandy Fischer, said her daughter tested negative for COVID-19, “however, her ‘COVID fingers’ have returned. She is very fatigued. Swelling, pain all over her body. Even soft touch hurts.”

Fischer said she wants other parents to understand how difficult COVID-19 can be for children and encouraged them to vaccinate their children. Arabella got the shots after she turned 12 in March and became eligible, while her sister, Sophia, will once they become available to younger children.

“If you’re on the fence, trust me. Take my word for it. Learn from our trauma. Just do it. If you can lessen the severity of this sickness, which is a very interesting and severe sickness, then do it,” Fischer urged. “That regret, if your child becomes a long-hauler, is so much heavier than a sore arm or a little bit of a fever.”

Medications and supplements that Ashley Blackburn and her daughter, Emery, 9, are taking to deal with their long-haul COVID-19 symptoms are photographed at their home in South Jordan on Tuesday, Sept. 14, 2021. | Spenser Heaps, Deseret News

Keeping children safe

No one knows how to prevent an infection from turning into long COVID-19, Pavia said, but the good news is that most children and adults who have it are likely to get better. A new clinic in Utah expected to launch soon to study the symptoms in children may provide some answers, he said.

Getting vaccinated against COVID-19 is the best way to keep the virus at bay, Pavia said, noting those who do have breakthrough cases after getting the shots are believed to be at much lower risk of suffering from post-virus issues.

And while coronavirus vaccinations, currently available in the United States only for those 12 and older, may be approved for children as young as 5 years old later this year, the doctor said there are steps that can be taken now to help keep them safe as the pandemic continues.

“We know how to do that. Masks work very well if everyone wears them. Making your social activities be outdoors is very effective prevention,” Pavia said. So is ensuring all eligible family members get vaccinated to reduce the risk of infection in children, he said, because it’s the adults in their lives who are most likely to pass along the virus.

Although much of the focus on protecting children is centered around the time they’re in school, Pavia said many more hours are spent at home in close quarters. “You kiss, you hug because that’s what families do. That’s certainly a higher risk setting for transmission if somebody comes home with a virus than a schoolroom,” he said.

Utah doctor sees another advantage to masks in schools — stopping spread of RSV

Ashley Blackburn expressed frustration that few children are wearing masks to class.

“I make my kids wear masks because COVID has affected our life in a really bad way. I’m upset that we don’t have a mask mandate. It’s really, really troubling to me, because it makes sense, especially with our numbers right now and the delta variant,” she said. “Our kids are really vulnerable because they can’t get vaccinated.”

Still, Blackburn hesitated when asked if she planned to vaccinate her children once they’re eligible.

“Honestly, I don’t know. I think so. The vaccines scare me a little bit,” she said.

Cody Strong, a senior at Corner Canyon High School, works out at Treehouse Athletic Club in Draper on Wednesday, Sept. 29, 2021. Cody battled COVID-19 and is on the comeback. | Scott G Winterton, Deseret News

‘You need to take it seriously’

Corner Canyon High School senior Cody Strong, 18, who along with his teammates set a state track and field record in the 4x100 meter relay, said he feels “like I’m 90% to 95% there” after a long recovery from post-COVID-19 symptoms that included blood in his urine and difficulty breathing.

Last fall, the Draper teenager said he got sick with what seemed like “a small cold. Then the taste went away. Then the smell.” During his junior year, “just to jog around the track, I would struggle. When I would take a deep breath, I could feel my chest get tight. It was different. It was just hard doing practices and running and all that.”

Despite the difficulties, Cody said he never thought about slowing down. His goal is to earn a track scholarship to Brigham Young University, so he stuck with the sport and hopes to be in top form when the season starts early next year.

“I love track so I was like, ‘No, I’m not going to quit,’” he said, even though some of the virus’ aftereffects were startling.

“The bleeding kidneys, that kind of scared me because that could have been lots of other problems,” Cody said. “I would pee out blood and all that. It would only hurt when working out. But when we figured it out, I felt like it was OK, I’m happy there was nothing wrong, truly wrong. It stopped.”

While he has since talked with friends about what he went through, only his mother, coach and doctors knew his symptoms at the time. Some of his classmates who had COVID-19 temporarily lost their sense of taste or smell, but Cody says he’s not aware of anyone who also had bleeding kidneys.

It made him feel “like the odd one out. I don’t know how to explain it. It’s hard. ... It’s frustrating,” Cody said. He said he didn’t discuss what was happening to him because “I didn’t want to scare anyone.”

Track practice doesn’t start until January, but Cody is working out and trying to regain the 20 pounds he lost. But some favorites, like chocolate, now seem bland and tasteless so the teenager said he’s lost his passion for eating and now sits down to a meal or snack only “because I need it.”

He said everyone needs to understand how serious COVID-19 can be, even in the young.

“Even though you’re healthy as a horse, it can still affect you. You need to take it seriously,” Cody said. That includes other teenagers, who “just feel like it will be a breeze because they’re healthy, young, energetic and all that good stuff.”