SALT LAKE CITY – The number of patients at the Primary Children’s Hospital diagnosed with coronavirus-related complications has doubled in the past two months.
In fact, there are now more than 1,500 confirmed cases of multisystemic inflammatory syndrome in children, also known as MIS-C. The syndrome develops after the child has been infected with SARS-CoV-2.
As medical experts try to unravel the long-term effects of COVID-19, officials at Children’s Primary Hospital announced on Tuesday that they will begin the first semester study at MIS-C.
The long-term results after multisystemic inflammatory syndrome in children, known as the MUSIC Study, will seek to answer how MIS-C affects children who were diagnosed five years after its development.
The major project will include the work of more than 30 children’s hospitals in the United States and Canada. It is funded by the National Heart, Lung and Blood Institute, said Dr. Ngan Truong, a pediatric cardiologist at the University of Utah Health and Intermountain Primary Children’s Hospital, and co-leader of the study.
“The MUSIC study comes at an important time,” she said. “My colleagues and I at the Intermountain Children’s Primary Hospital are treating dozens of young patients with MIS-C at this time and continue to care for them after their hospitalization.”
The initial impacts of MIS-C
In October, 12-year-old Madilyn Dayton from Cokeville, Wyoming, woke up feeling immense pain. She was unable to move much and ended up at the Children’s Primary Hospital, where she was soon diagnosed with MIS-C.
Her family had no idea that she had been exposed to COVID-19, as no one in the eight-person household had shown symptoms or a positive test for him. What started out as flu-like symptoms quickly turned into something much more serious.
Madilyn and her mother, Marilyn Dayton, shared their story last year. A few months later, Madilyn said she was “much better now”.
“I can still get tired very easily, but otherwise everything is almost back to normal,” she said, joining the video chat study announcement with her mother.
Marilyn Dayton said she had kept Madilyn out of school since her diagnosis as a precaution and due to her chronic fatigue. Once an active child who participated in many sports, Madilyn was out of breath after five minutes of playing a basketball.
“We noticed the fatigue part,” said Marilyn Dayton. “I don’t know if she would be able to get up and do a whole day of school and take care of everything yet. She still sleeps a lot.”
There are still many unknowns about MIS-C, which is why Madilyn will participate in the new long-term study. The post-coronavirus complication results in all different types of reactions, and it is not clear how long they last.
Truong explained that MIS-C is a rare complication of COVID-19 infection that is believed to be the result of an “extreme immune response” to SARS-CoV-2. It mainly affects school-age children, but it has also been reported in babies and young adults. Symptoms include fever, abdominal pain, diarrhea, red eyes, skin rash and fatigue.
It can result in serious illness in various organ systems, such as the heart, lungs, blood, kidneys or brain. Children who develop MIS-C are usually hospitalized and need intensive care due to low blood pressure, shock or heart problems.
The total number of children hospitalized at the Primary Children’s Hospital with MiS-C since the beginning of the pandemic is about 50, but the number is growing, said Truong. The hospital has reported about 30 new cases since mid-November. The increase in MiS-C cases appears to follow similar patterns over an increase in coronavirus-related children’s hospitalizations in Utah, which was pointed out in a University of Minnesota study.
The Centers for Disease Control and Prevention have reported 1,626 cases of MIS-C across the country since April 2020. It has also reported 26 deaths of children who had symptoms that met their definition of the syndrome.
Because the COVID-19 vaccine has not yet been approved for children, experts say the only thing to slow MIS-C is protective measures to combat the spread of the coronavirus.
The data also shows that a disproportionate number of blacks and Latinos were affected, added Truong. Still, there are not many answers when it comes to understanding the syndrome, for example, why some children develop it.
“MIS-C is a big mystery up to this point,” she said. “We still don’t know what risk factors cause some children with COVID-19 infection to develop MIS-C and others not.”
These unknowns also include whether this can lead to serious long-term effects, such as scarring of the heart, which can lead to serious heart problems and possibly even death. The unknowns in the heart are one of the reasons why some pediatricians may recommend a recovery three to six months before physical activity, such as playing sports.
Seeking answers for long-term effects
The possible long-term effects go beyond the heart. The study can determine how long Madilyn’s documented chronic fatigue will last. Along with the difficulty in concentrating, it emerged as a longer side effect of COVID-19 in adults, Truong said.
The researchers will also dive into reviewing the long-term effects on the nervous system, lungs, immune system and gastrointestinal system. This will be conducted by reviewing hospitalization data and follow-up visits, as well as annual telephone interviews with participants to check their symptoms after time.
Many hospitals were already carrying out follow-ups of up to six months to check patients with MIS-C, so the study will review the results that were collected from participating hospitals.
“We will also look for genetic clues about disease risk and outcomes,” said Truong. “We will use this information to create evidence-based treatment guidelines for MIS-C that will help pediatricians to identify and respond better to children with symptoms of MIS-C.”
I wanted answers … Unless they do studies like this and find participants to participate in, they can’t get those answers.
– Marilyn Dayton
For Truong, she considers the study relevant to the families of children diagnosed with MIS-C. She said she frequently receives questions from parents who want to know if their child’s symptoms at that time will persist in the future – and for how long.
These are questions to which she had no answers.
“Unfortunately, I don’t have a clear answer for them right now, and the data we have is very limited now. However, I hope that in the coming years we will have more answers for parents and my patients,” she said. “We hope that the data from the MUSIC study will help provide us with guidance and long-term follow-up strategies for children and young adults, as if we need to restrict their activities.”
Marilyn Dayton is one of the parents who asked about her son’s future. Although she and Madilyn wanted to have the answers now, they took the chance to participate in the study.
It is something they said they never questioned or doubted.
“I wanted answers,” said Marilyn Dayton. “Unless they do studies like this and find participants to participate in, they won’t be able to get those answers.”
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