She ran beside her teammates on the turf field, nestled between green mountains and a hazy Denver skyline, shuffling a soccer ball beneath the June sun.
Her cheeks were flushed from the heat and exercise. Nearly a year had passed since the 17-year-old was on a soccer field with her team and she almost felt normal again.
But her heart rate was rising.
And when her heart races, Lilly Downs would later explain, she can feel it pounding in her chest. She can feel her chest tightening, making it harder to breathe. Her head hurts, too, when her heart rate spikes, sometimes just from standing — which has happened more often than she’d like in the months after her first bout with COVID-19 late last year.
Lilly glanced at the Apple Watch on her left wrist. It showed her heart racing at 191 beats per minute, higher than she expected. If that number continued to rise, she’d have to leave the field to rest. She wasn’t supposed to let it go above 200 beats per minute.
She shouted the number to her coach, who was on the sidelines watching, before refocusing on the soccer ball her teammates passed back and forth in a drill. “Yeah!” Lilly shouted, calling for the ball and swiftly passing it to the next player.
“Good run, Lilly!” a teammate cheered.
Lilly glanced at her wrist, checking her heart rate again, then kept running.
Ever since Lilly was first hospitalized with the coronavirus in November, she has lived with persisting symptoms — quick heart rate, fatigue, mouth ulcers, brain fog and more — from the infection. She, along with her parents and doctors, have struggled to find answers as to why her symptoms have lingered and how to treat them as she navigates the return to activities, such as soccer and school, with a condition that no one knows how long will last.
“Is it going to be months? Is it going to be forever?” said Dr. Nathan Rabinovitch, a pediatric immunologist at National Jewish Health in Denver and one of Lilly’s physicians. “We don’t know yet because we are so early in the pandemic.”
Only a handful of studies have examined what has become known as long COVID in children and teens, and in those that do exist, researchers lament the lack of data on the condition, which was first described in adults. Their estimates of how prevalent long COVID is in adolescents vary.
Yet physicians are concerned that as COVID-19 cases have risen among students in Colorado and across the nation with the return to school this fall, even more young people will become so-called long-haulers.
One study, published in the Acta Paediatrica journal in April, found that more than one-third of the 129 children who contracted COVID-19 that researchers followed in Italy last year had one or two lingering symptoms and about a quarter had three or more symptoms remain after their initial infection.
Lilly’s first hospitalization last fall came as the pediatric medical community was both unprepared for the surge in children with COVID-19 and the fact that some patients’ symptoms persisted long after their initial infection, according to physicians who spoke to The Denver Post.
“It is thought of as an adult disease and kids don’t get it,” Rabinovitch said. “Kids have been short-changed, I think, in that way.”
That June morning on the soccer field at Dakota Ridge High School in Littleton represented a marked improvement in Lilly’s health.
Her symptoms had been so severe she spent Christmas, then New Year’s Eve, in the hospital. When Lilly finally left, she contracted COVID-19 a second time.
During the spring and early summer, when she felt well enough, Lilly and her parents spent evenings on a soccer field near their home in Golden practicing and hoping that one day she would play again. She’d try to kick the ball and her lungs would start to burn.
One day she forgot to take her medication and her heart rate soared above 200 beats per minute, just from standing between the goalposts, fielding balls kicked by her brother. The high rate is caused by postural orthostatic tachycardia syndrome, or POTS, a disorder that has been found in people with long COVID.
But now, Lilly was finally well enough to move from the sidelines where she’d watched her teammates play to rejoining them on the pitch — or so she thought.
“A little cold or something”
Lilly woke up one morning during the first week of November, at around 7 a.m. as she did every day before school. She showered, got dressed, and then, feeling very tired, went back to sleep. Almost seven hours later, at 1:45 p.m., the ring of her cellphone jolted her awake.
Her brother Isaac was calling; he wanted to know where she was.
Lilly was supposed to drive him home from school that day, but she never made it herself. And now her throat hurt, her nose was runny, she had chills and was running a fever of 102.
“I thought I just got a little cold or something,” Lilly later recalled.
Still, she figured she’d better get tested for COVID-19.
In early November, Colorado already was in its worst period of the pandemic. COVID-19 cases were surging well above what the state saw in spring 2020 when the World Health Organization declared the coronavirus outbreak a global pandemic. In just weeks, hospitals started diverting ambulances and running out of intensive-care beds as they were flooded with patients. It became the state’s deadliest wave by early December.
At the time, the coronavirus still was widely believed to primarily affect adults. It’s not that children and teens didn’t get infected by the virus — they did — but the messaging from public health and medical officials stressed that younger people were much less likely to experience severe COVID-19 symptoms that could land them in the hospital. That messaging was sometimes misinterpreted — either knowingly or not — to mean kids didn’t get sick at all. Some of the pandemic’s grimmest scenes occurred in nursing homes, after all.
But children do get COVID-19, though they are significantly less likely than adults to be hospitalized or die. An unknown number of those who recovered also went on to experience symptoms that have lasted weeks or months.
“It did take some time for it to come to clinical mass to understand kids were having these problems as well as adults,” Dr. Alexandra Yonts, a pediatric infectious disease physician at Children’s National Hospital in Washington, D.C., and director of its post-COVID program. “It is regrettable.”
Colorado saw its largest wave of infections among children and teens during the same month Lilly first became sick. The state recorded 14,957 cases among people under 18 years in November alone — 3,806 more infections than it saw during the entire first eight months of the pandemic, according to data from the state Department of Public Health and Environment.
Of the thousands of adolescents to become sick in November, only 105 were hospitalized that month. It’s unknown how many of them have lingering symptoms; the state health department does not track data on what it calls post-COVID conditions in children.
“It went from all these kids not getting sick,” Lilly said. “And then, about the time I got sick, everyone started to say, “Oh, I have all these long COVID symptoms.”
Children and teens, who were tested less often, were more protected when schools moved into remote learning in 2020, but now infections among the age group have increased again as they returned to in-person classes this fall amid the rapid spread of the highly contagious delta variant, Yonts said.
“Now what we are seeing are a lot of hospitalizations with the delta variant,” she said.
In Colorado, at least 10,666 children and teens tested positive for COVID-19 in September, up from 8,366 cases in August and 2,858 cases in July. At least 74 children were hospitalized last month, more than double what the state saw in June before infections began rising, according to data from the health department.
While doctors knew to look for a rare condition called MIS-C that appears in children after a coronavirus infection, they were slower to realize kids also were developing long COVID, according to medical experts.
So when Lilly was hospitalized last fall and began developing lesions on her face, stomach, thighs, back and in her mouth that never seemed to go away, doctors were flummoxed.
A medical mystery
Lilly first visited an emergency room Nov. 7, the day after her test results came back positive for COVID-19. The day before she was admitted, she began having difficulty breathing. Her lips began turning blue. She felt dizzy.
Lilly’s symptoms improved overnight, but worsened again the next day. She arrived at the emergency department at Children’s Hospital Colorado’s campus in Highlands Ranch just before 9 p.m. and was sent home a few hours later with an albuterol inhaler.
She returned almost a week later, and this time, she stayed.
Lilly’s fever had returned again, then it disappeared. A rash formed on her face and Lilly’s chest was so heavy she felt like she was breathing through a straw.
Doctors screened the teenager for MIS-C, blood clots, pneumonia and myocarditis, ruling out each one as they went.
Then, within a matter of days, pink blotchy patches appeared on Lilly’s body. They turned into deep and red ulcers, yet did not bleed. They first showed up on her cheeks, forehead and chin, before spreading to even the inside of her mouth.
The lesions came almost daily for three months, causing the then-16-year-old so much pain she couldn’t sleep.
On Nov. 17, almost two weeks after her symptoms first appeared, Children’s Hospital Colorado moved Lilly to its main campus in Aurora. There, doctors tried to solve and treat the mysterious skin lesions with little success.
Representatives of Children’s Hospital Colorado declined to comment on Lilly’s case, citing the federal Health Insurance Portability and Accountability Act, known as HIPAA. The hospital also declined to answer general questions submitted by The Post about how it treats COVID-19 and long COVID in children and teens.
But Lilly’s medical records, which were provided to the newspaper by her family, show that as November gave way to December, and her condition did not improve with steroids and intravenous immunoglobulin therapies, physicians began to consider it “less likely” the lesions were caused by the coronavirus.
One treatment they saw improvement with was a 10-day course of remdesivir, which they gave to Lilly in mid-December after finding particles in her eccrine skin cells that they thought could be from the virus. The teenager’s lesions even briefly disappeared after she was administered the antiviral drug, which was the first COVID-19 treatment approved by the U.S. Food and Drug Administration. But it was short-lived.
The lesions — and the pain they caused — came roaring back after the treatment stopped, according to her medical records.
While the physicians at Children’s Hospital did not completely rule out the possibility the lesions were caused by a viral infection, they noted in the records that they did not match the type of skin rashes initially reported in COVID-19 patients. Additional tests taken after they gave Lilly remdesivir also came back negative for the virus, according to the doctors’ notes in her medical records.
Lilly’s improvement on remdesivir, they wrote, was a “correlation and not indicative of viral suppression.”
Starting in November, the doctors at Children’s Hospital began considering another potential cause for the lesions: self-harm.
As the Christmas holiday approached, and the physicians began to focus mostly on managing Lilly’s lesions and pain, they believed it was “important to more explicitly and carefully evaluate” the possibility the wounds were caused deliberately, according to a note made by a hospitalist on Dec. 24.
“One of the pain doctors said I had a confidence issue so that’s why one drug worked and another one didn’t,” Lilly later recalled.
Lilly and her parents became discouraged by the treatment from the medical team at Children’s Hospital and began seeking a second opinion, but with hospitals filling up across the U.S., they couldn’t find one until mid-January.
Lilly wasn’t harming herself, they said, and to prove the lesions were not caused by the teenager or her mother, the family agreed to let a hospital monitor sit in Lilly’s room and observe her for 24 hours.
The first sitter arrived on Christmas morning. The lesions reappeared on Lilly that evening, while she slept and “in areas that would be difficult to reach if she were doing this to herself,” the monitor wrote in Lilly’s medical records.
During those months in the hospital, Lilly’s mother, Elisa Downs, a nurse herself, took notes on her iPhone to help her keep track of all the doctors and treatments given to her daughter. One Tuesday, after a meeting with the specialists on Lilly’s case, she typed out her frustration.
“(Doctors) basically told us there is nothing more they can do,” she wrote on Dec. 8. “Goal to manage Lilly’s pain and get her sleep.”
One of the physicians stopped by the hospital room later that day. She apologized.
The team is not giving up on Lilly, she said.
Learning to live with long COVID
On the soccer field, Lilly could still feel her heart beating rapidly, so she looked at her watch: 201 beats per minute.
She walked off the field as her teammates continued the drill, and took a sip of water from a bottle, keeping an eye on her watch. Her coach, John Cassidy, walked over.
Just rest for five minutes, he told her.
“Forget about the heart rate,” Cassidy said. “Just do five and it will go down.”
Cassidy had coached Lilly for a year. He knew just how sick the coronavirus made her. He recalled the days when he texted Lilly and her mom, and it would take 24 hours, sometimes 48 hours, for them to respond. “Then you would know it was bad,” he said.
When she finally texted back, he said, Lilly would just tell him it was “a bad time.”
Cassidy tried to help Lilly cope with those really bad days, help her escape the hospital and its doctors and nurses. Picture a beach, he would tell her, and imagine yourself there. He even ordered a poster of a beach pictured through a white window frame for her family to hang in Lilly’s hospital room.
The coach understands, in his own way, what she was going through. When he was in his 20s, he became ill and barely left his bed for six months, and as with Lilly, the doctors couldn’t find an answer for his symptoms before eventually diagnosing Cassidy with a bone marrow iron deficiency. He tried to help Lilly take each day at a time.
“Most of the girls on the team, they don’t know, really, what she went through,” he said.
On the sidelines, Lilly looked at her watch again: 160 beats per minute.
“You’re in good shape, but your body is still recovering,” Cassidy said.
Six minutes passed. Lilly’s eyes flicked down to the watch.
“What is it now?” Cassidy asked.
“One-hundred-and-fifty heart rate,” she replied. “That’s the lowest it will come until I sit down.”
Lilly rushed back on the field two minutes later, and not long after, her heart rate started rising again.
“It’s hard to figure this out”
Earlier this year, a 5-year-old arrived at National Jewish Health with a cough that never disappeared after he became sick with COVID-19. Doctors at the Denver hospital discovered he had asthma.
Soon after, more children began arriving with persisting symptoms, prompting the hospital to open its pediatric long COVID clinic in March. A similar scene has played out at Children’s National Hospital in Washington, D.C., and now, a team of researchers is launching a study to examine the long-term effects of COVID-19 in at least 1,000 children and young adults.
The most common symptoms Rabinovitch, the director of the National Jewish unit, has seen among children and teens are fatigue, breathlessness and gastrointestinal symptoms.
Some children have fevers that come and go. Others show signs of anxiety and sleeplessness. Another person may have muscle weakness. Children that were once great students can no longer focus.
“A lot of physicians are skeptical because it’s hard to figure this out,” Rabinovitch said. “It’s not straightforward. It’s easy to think this is all kind of psychosomatic.”
In June, Lilly sat with her legs crisscrossed on a bed in an exam room, scrolling through her phone. Her mom, Elisa, sat in a nearby chair looking at the notebook she’d brought to track Lilly’s progress. The pair were growing accustomed to the constant doctor visits. This was their second that week.
Elisa spent the summer coming to terms with the fact that Lilly’s symptoms may not go away. The realization hit her daughter sooner.
“I came to terms with that a while ago,” Lilly told her mom in September. “You just didn’t want to accept it.”
Lilly has one of the most difficult cases of long COVID that the doctors at the National Jewish clinic have seen. Not only does she have a wide range of symptoms, but they’re severe.
Among the unknowns of long COVID in children is who gets the symptoms and why, and how long they will last. But the fact that people are developing chronic illnesses after their coronavirus infections is not unusual. Other viral infections have caused similar conditions, according to medical experts
For example, there is evidence — although it’s not definite — that infections can trigger conditions such as Behcet’s syndrome, a rare disorder that causes blood vessel inflammation, and lupus, an autoimmune disease, said Dr. Yusuf Yazici, director of the Behcet’s Syndrome Center at NYU Langone Health in New York.
Long COVID also has similarities to ME/CFS — named myalgic encephalomyelitis/chronic fatigue syndrome — most notably in that they both share the symptom of post-exertional malaise. This symptom, which the Centers for Disease Control and Prevention lists for both conditions, occurs when a person “crashes” and takes days or weeks to recover after an activity.
One of the theories surrounding long COVID looks at whether a person may have a lingering infection somewhere in their body that doctors have been unable to locate, said Dr. Chad Lomas, an allergy immunology fellow and one of Lilly’s physicians at National Jewish.
In theory, this could explain why Lilly tested positive for COVID-19 a second time in late February. But doctors think she was actually infected by a different strain of the virus, he said.
They are still trying to figure out why Lilly is having prolonged symptoms. Earlier in the summer, doctors considered the possibility that somehow the virus triggered Behcet’s syndrome in Lilly. She appeared to respond to the treatment, but they were caught off guard later in the summer when she began having more gastrointestinal issues, such as trouble swallowing, Lomas said.
“It took a turn we weren’t expecting,” he said, adding, “She is such a puzzle.”
A search for normalcy
One day in August, Lilly stretched out on a hospital bed as her mom quietly slipped out into the hallway with one of her doctors. They were discussing plans to place a feeding tube through Lilly’s nose to help give her nutrients.
The teenager had been unable to keep food or water down for more than a week. She’d lost 6 pounds. She suffered stomach pains each time she tried to eat or drink, and became so dehydrated her muscles and head ached. After vomiting blood, Lilly and her dad decided she needed to come to the hospital.
That was on a Saturday.
It was now Monday, and Lilly was itching to leave the hospital. The first day of school was two days away.
Lilly was about to start her senior year at Lakewood High School. The last time she attended classes in person was almost a year earlier, right before she tested positive for the coronavirus.
All of the seniors planned to go to Red Rocks Park and Amphitheatre to watch the sunrise before the first day of classes. Lilly wanted to join them, but still was waiting to find out if she would get out of the hospital in time.
“I guess if I have to miss, the first day would be best,” Lilly said. “But I was hoping we could get out.”
Elisa, who was wearing a mask, walked back into the room, settling on the couch beside Lilly’s bed. She had been on a work trip when Lilly arrived at Rocky Mountain Hospital for Children in Denver and came straight from the airport. She had yet to go home.
Unlike last year, the mother and daughter didn’t bring anything that would remind them of home. They didn’t want to get too comfortable.
So they kept the blue hospital room exactly as they found it.
“Hopefully, Wednesday,” Lilly said. “Maybe, I can go to school Thursday?”
Elisa just nodded.
“What?” Lilly asked.
“You need to have some strength,” her mother replied.
The first day of school came and went on a Wednesday in August and Lilly was still in the hospital. But she did return, three days after her classmates and with a feeding tube in place.
Focused on her classes and friends, Lilly sometimes forgets just how sick she still is. Her classmates don’t always realize it either. The masks students wear helps; Lilly’s hides the tube in her nose. People tell her she looks happy and healthy. She doesn’t always have to focus on her health.
“I mean, yeah, I threw up 10 minutes ago,” she said. “People don’t understand the blurry area between being in the hospital and being fine.”
Lilly had hoped getting the COVID-19 vaccine over the summer would have helped with her fatigue. It did for about a month, but she still crashes and has to sleep for hours after school. She misses classes when she doesn’t feel well and worries it annoys her teachers.
But she didn’t completely miss out on the first day of school.
Lilly’s alarm woke her at 5:40 a.m., and from her hospital bed she joined her friends on a video call. Together they watched the sun rise above the red rocks and the morning sky became a swirl of blue, red, orange and yellow.
This content was originally published here.