Their toddler was hospitalized with a rare syndrome linked to COVID-19. Now she’s in a 5-year study to see if there are lasting effects.

When the toddler’s fever spiked at 101.2 and lasted less than 24 hours, her parents felt something akin to relief. It was the only symptom, other than a brief coughing fit one night, that Emilia Beck experienced after contracting the coronavirus in January.

She spent most of her illness snuggled between her parents in bed, watching television, as they were laid up with teeth-chattering chills, fevers, body aches and headaches from their own bouts with the virus. Beside Emilia, her mother Nina Beck felt as though her organs were trying to crawl out of her skin.

But the 2-year-old appeared to have avoided a more severe outcome from her coronavirus infection — or so her parents thought.

Just over three weeks later, Emilia was in the hospital. After her bout of COVID-19, she developed a mysterious condition called Multisystem Inflammatory Syndrome, or MIS-C, that so far only has affected 3,185 children in the United States, including 64 in Colorado.

And it was beginning to damage a small part of Emilia’s heart.

“After we got COVID, I didn’t even think about her potentially getting (MIS-C) a couple weeks later because she seemed to have such mild symptoms,” said her father Derek Beck.

As a new condition, much is still unknown about MIS-C. Physicians are trying to determine why some children and teenagers get the syndrome but others don’t. It’s also too soon to know if those who recover will face long-term effects.

While it’s rare, MIS-C can become serious and patients, most of whom are children and teenagers, can end up in the intensive care unit. A small number — 36 — of patients have died in the U.S., including 2 in Colorado, according to the Centers for Disease Control and Prevention.

Emilia’s parents worry that even as her symptoms have abated they could return in the future. So for the next five years, doctors at Children’s Hospital Colorado will monitor Emilia for any sign of symptoms returning or potential lingering effects to her heart.

“For us, the concern is that (doctors) don’t know if they should be concerned still,” Nina Beck said.

“We had no idea what’s going on”

Emilia’s first symptoms of MIS-C arrived in early February, weeks after the family recovered from their COVID-19 illnesses. She had a fever of 102. She began crying a lot more than usual and waking up in the middle of the night.

She also began telling her parents her belly button hurt and kept asking to go to the bathroom, which her mother thought was a sign that she had a urinary tract infection.

Curiously, Nina Beck and her husband also noticed Emilia’s lips were extremely chapped.

Still, her parents thought she had a urinary infection. So, on Feb. 13, they took her to an urgent care facility near their home in Highlands Ranch, where a doctor agreed the symptoms matched an infection but also said the timing of Emilia’s illness was a concern and they should watch her for symptoms of MIS-C.

The physician sent Emilia home with an antibiotic, but her symptoms only got worse. Her fever rose higher, she became lethargic and her lips began turning blue. Still, doctors thought it was a urinary tract infection, so she was given a higher dose of antibiotics.

But days later, Emilia still had a high fever and a rash developed, starting on her neck and spreading to her entire body. Her eyes were bloodshot, her lips cracked. Then, the urine culture came back negative.

Doctors told the Becks to pack a change of clothes and to take Emilia to Children’s Hospital. There, additional tests showed high inflammation and an elevated white blood cell count, creating further concern.

“The first day or two in the hospital was pure terror just because we had no idea what’s going on,” Nina Beck said.

What is known about MIS-C

Doctors and researchers are still trying to figure out why some children and teenagers develop MIS-C. A study published earlier this week in JAMA Pediatrics found that most MIS-C cases come after asymptomatic or mild COVID-19 illnesses and are followed by a hyperinflammatory response that happens when a patient’s body has produced antibodies to the virus.

“For most people, we actually can’t find the virus in their body” when they are diagnosed with MIS-C. Instead, their body is having a reaction to their previous COVID-19 infection, said Dr. Sam Dominguez, associate professor of pediatrics at Children’s Hospital Colorado.

One way to think of it is that MIS-C is a form of long COVID — where symptoms linger — because it is a post-infection complication, said Dr. Adrienne Randolph, a professor of anesthesia and pediatrics at Harvard Medical School and Boston Children’s Hospital.

“This virus itself is a very strange virus, the way it affects kids,” she said. “In those with MIS-C, multiple organ systems are involved.”

MIS-C can inflame the heart, lungs, kidneys and brain. Symptoms include fever, abdominal pain, vomiting, diarrhea, neck pain, rash, bloodshot eye and fatigue, according to the CDC.

The condition also can cause serious symptoms, such as trouble breathing, pressure in the chest, inability to stay awake, and pale, gray or blue-colored skin, lips and nail beds, according to the federal agency.

The CDC has only been tracking cases of MIS-C since May. Randolph said she thinks it’s possible some cases have gone unreported as hospitals and health systems were overwhelmed with responding to the pandemic.

Randolph is leading a study called Overcoming COVID-19, which is funded by the CDC to collect data on children hospitalized with the coronavirus, with the goal of understanding why some get sick but a vast majority of kids are protected.

The peak age for those with MIS-C is between six and 12 years. It is less common for patients five and under to get the syndrome, Randolph said.

As with the coronavirus in adults, people of color have been hit hard by MIS-C. More cases of MIS-C have appeared in Latino and Black children — 34% and 29%, respectively — than their white peers. The latter makes up 27% of cases, according to data from the CDC.

Often MIS-C symptoms develop two to five weeks after a child’s COVID-19 infection. Despite having milder or no COVID-19 symptoms, 58.2% of the 1,733 MIS-C cases examined by researchers required patients to be treated in intensive care units, according to the JAMA Pediatrics study published on April 6.

While the syndrome is rare, cases of MIS-C increased in the winter following the deadly surge in coronavirus infections statewide, with 26 illnesses reported in Colorado in December alone.

Previously, the state saw between two to five cases each month with a total of 23 cases reported between April and November of 2020, according to the state Department of Public Health and Environment.

So far, 39 cases of MIS-C have been reported in Colorado in 2021, said Jessica Bralish, spokeswoman for the state health department.

Trying to understand potential long-term impacts

At Children’s Hospital Colorado, physicians found a “mild impairment” of Emilia’s left ventricle of her heart. They started her on intravenous medication, including immunoglobulin.

“I was most concerned right after they did the (echocardiogram) and they said she had a little dysfunction in the heart,” Derek Beck said. “Is that permanent? Is there damage? Is this just a temporary dysfunction?”

Emilia is one of about 600 children and teens participating in the Long-Term Outcomes after the Multisystem Inflammatory Syndrome in Children — or MUSIC — study. It is funded by the National Institutes of Health and the National Heart, Lung and Blood Institute.

Through the study, researchers are looking at the long-term effects of MIS-C on children. Children’s Hospital is one of more than 30 medical centers participating in the research, which will follow patients up to five years after they are discharged from the hospital, according to a news release.

“It’s really important to answer those questions for their long-term health,” Randolph said.

So far, it appears that most children’s hearts recover quickly. However, some do have longer-term effects that have impacted kids’ ability to return to normal activities, such as trouble concentrating, tiredness, less muscle strength, abdominal pain and nausea, Randolph said.

Emilia’s case of MIS-C was caught early, meaning the inflammation did not do as much damage to her heart as it has in other children. She began feeling better after the immunoglobulin, her fever disappeared and she became more energetic.

But only a couple of days after she was discharged from the hospital, Emilia had another low fever and was lethargic. Her symptoms improved and then worsened over the next couple of days, resulting in at two more short hospital stays.

Her mother said Emilia is feeling better again. And so far, she’s shown improvement in her first two checkups after being discharged.

“The main concern is because it’s so new,” Nina Beck said. “They don’t know yet if the damage on the heart could develop later.”

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