SALT LAKE CITY — The number of patients at Primary Children's Hospital diagnosed with a coronavirus-related complication has doubled from the past two months.
In fact, there are now over 1,500 confirmed cases of multisystem inflammatory syndrome in children, otherwise known as MIS-C. The syndrome develops after the child has been infected by SARS-CoV-2.
As medical experts try to unravel the long-term effects of COVID-19, Primary Children's Hospital officials announced Tuesday that they will begin the first-term study of MIS-C.
The Long-Term Outcomes after the Multisystem Inflammatory Syndrome In Children, referred to as the MUSIC Study, will seek to answer how MIS-C affects children who were diagnosed five years after they developed it.
The massive project will include work from over 30 children's hospitals across the U.S. and Canada. It's funded by the National Heart, Lung and Blood Institute, said Dr. Ngan Truong, a pediatric cardiologist for University of Utah Health and Intermountain Primary Children's Hospital, and the study's co-leader.
"The MUSIC Study comes at an important time," she said. "My colleagues and I at Intermountain Primary Children's Hospital have treated dozens of young patients with MIS-C at this point, and we continue to care for them after their hospitalization."
The initial impacts of MIS-C
Back in October, 12-year-old Madilyn Dayton of Cokeville, Wyoming, woke up to find herself in immense pain. She couldn't move much and ended up at Primary Children's Hospital, where she was soon diagnosed with MIS-C.
Her family had no idea she had even been exposed to COVID-19 since nobody in the eight-person household had shown symptoms or tested positive for it. What started as flu-like symptoms quickly transitioned into something much more serious.
Madilyn and her mother, Marilyn Dayton, shared their story late last year. A few months later, Madilyn said she is "doing much better now."
"I still get tired a lot easily, but other than that everything's gone almost back to normal," she said, joining the announcement of the study through video chat along with her mother.
Marilyn Dayton said she's kept Madilyn out of in-person schooling since her diagnosis as a precaution and due to her chronic fatigue. Once an active child that participated in many sports, Madilyn was winded after five minutes shooting a basketball.
"We have noticed the fatigue part," Marilyn Dayton said. "I don't know if she could get up and do a full day of school and handle everything yet. She still sleeps a lot."
There are still many unknowns about MIS-C, which is ultimately why Madilyn will participate in the new long-term study. The post-coronavirus complication results in all sorts of different reactions, and it's unclear how long those last.
Truong explained that MIS-C is a rare complication of COVID-19 infection that's believed to be the result of an "extreme immune response" to SARS-CoV-2. It mostly affects school-age children but has also been reported in infants and young adults. Symptoms include fever, abdominal pain, diarrhea, red eyes, rash and fatigue.
It can result in severe illness to multiple organ systems, such as the heart, lungs, blood, kidneys or brain. Children who develop MIS-C are often hospitalized and require intensive care due to low blood pressure, shock or heart issues.
The total number of children hospitalized at Primary Children's Hospital with MiS-C since the pandemic began is about 50, but the number is growing, Truong said. The hospital has reported about 30 new cases since mid-November. The rise in MiS-C cases appears to follow similar patterns about a rise in coronavirus-related child hospitalizations in Utah, which was pointed out in a University of Minnesota study.
The Centers for Disease Control and Prevention reported 1,626 cases of MIS-C nationwide since April 2020. It also reported 26 deaths of children who had experienced symptoms that met its syndrome definition.
Since the COVID-19 vaccine hasn't yet been approved for children, experts say the only thing to slow down MIS-C is protective measures to combat the spread of the coronavirus.
Data also show a disproportionate number of Black and Latino were impacted, Truong added. Still, there aren't many answers when it comes to understanding the syndrome, such as why some children end up with it.
"MIS-C is largely a mystery to this point," she said. "We don't know yet what risk factors that make some kids with COVID-19 infection develop MIS-C and others not."
These unknowns also include if it could lead to serious long-term effects like scarring of the heart, which can lead to serious heart issues and possibly even death. The unknowns on the heart is one reason some pediatricians may advise three to six months recovery before physical activity like playing sports.
Seeking answers to long-term effects
Possible long-term effects go beyond the heart. The study could determine how long Madilyn's documented chronic fatigue will last. It — along with difficulty concentrating — has emerged as a longer side effect of COVID-19 in adults, Truong said.
The researchers will also dive into reviewing long-term effects on the nervous system, lungs, immune system and gastrointestinal systems. This will be conducted by reviewing hospitalization and follow-up appointment data as well as annual phone interviews with participants to check in on their symptoms after time has passed.
Many hospitals were already conducting follow-ups up to six months to check in with MIS-C patients, so the study will review results that were collected from participating hospitals.
"We'll also look for genetic clues about disease risk and outcomes," Truong said. "We'll use this information to create evidence-based treatment guidelines for MIS-C that will help pediatricians better identify and respond to children with MIS-C symptoms."
I wanted answers ... Unless they do studies like this and find participants to participate in it, they can't get those answers.
– Marilyn Dayton
For Truong, she finds the study to be relevant for the families of children diagnosed with MIS-C. She said she often receives questions from parents who want to know if the symptoms their children have at that time will persist in the future — and for how long.
Those are questions she hasn't had answers for.
"Unfortunately, I don't have a clear answer for them at this point, and the data that we have are very limited right now. However, I hope that in the coming years we'll have more answers for parents and for my patients," she said. "We hope that the data from the MUSIC Study will help to provide us guidance and long-term follow-up strategies for kids and young adults, such as if we need to activity-restrict them."
Marilyn Dayton is one of the parents who asked about her child's future. While she and Madilyn wish they had the answers now, they jumped at the chance to participate in the study.
It's something they said they never really questioned or had doubts about.
"I wanted answers," Marilyn Dayton said. "Unless they do studies like this and find participants to participate in it, they can't get those answers."