SALT LAKE CITY, Utah – Intermountain Primary Children’s Hospital is leading the nation’s first long-term study into COVID-19 related multisystem inflammatory syndrome in children, or MIS-C.

University of Utah Health’s and Intermountain Primary Children’s Hospital’s pediatric cardiologists will be tasked with the study that includes data from 30 different hospitals in the United States.

We first told you about it back in May when one Utah child had the syndrome.

Now, it has sickened dozens of kids, including Madilyn Dayton. “None of us had any symptoms. None of us had tested positive,” said Marilyn Dayton.

When the 13-year-old’s parents took her to Primary Children’s Hospital with a fever, headache and a rash in October, they had no idea her illness was related to COVID-19 because no one in their eight-person family had it.

MIS-C is a rare, extreme immune response to COVID-19, and can cause severe illness involving the heart, lungs, blood, kidneys, or brain. Children with MIS-C are hospitalized, and often require intensive care. More: https://t.co/16zn2gexpT 3/7

— Primary Children's Hospital (@primarychildren) January 26, 2021

“One day, she woke up and discovered she couldn’t move without much pain. She would soon learn that she had MIS-C,” said Dr. Dongngan Truong, a pediatric cardiologist at Intermountain Primary Children’s Hospital, U of U Health.

“MIS-C can cause severe illness involving any organ system – kidneys, heart, lungs,” said Truong. “Children with MIS-C are often hospitalized due to low blood sugar, shock, or decrease squeeze to the heart.”

Now, the pediatric cardiologist from Primary Children’s is co-leading the county’s first long-term study on MIS-C to find answers. It’s called the MUSIC study – short for “Long-Term Outcomes after the Multisystem Inflammatory Syndrome In Children.”

The five-year longitudinal study is funded by the National, Heart, Lung, and Blood Institute and is co-led by Dr. Jane Newburger of Boston Children’s Hospital.

“MIS-C is largely a mystery at this point,” she said. “We don’t yet know what risk factors make some kids with COVID-19 infection develop MIS-C, and others not.”

Truong hopes they can better understand the long-term effects of MIS-C for quicker detection and treatment. Right now, the data is limited.

“I hope that in the coming years I will have more answers for parents and for my patients,” she said.

The Daytons are participating in the study so that other families may have better answers in the future.

The best way to avoid the syndrome is to avoid the virus: mask up, social distance and avoid gatherings outside your household.

Children who’ve had the syndrome are being restricted from playing sports for three months after recovery because health officials don’t know how it affects the heart yet.

Data shows Black and Latino children are disproportionately affected with MIS-C. Doctors are looking to study genetic testing and outlying factors in children that could contribute to more severe cases of the disease.

Authorities said symptoms are similar to other illnesses — fatigue, vomiting, diarrhea, and fever — which is why it’s important for parents to bring their children to get check out specifically for MIS-C.

The study will hopefully produce more information about MIS-C and give doctors more concrete data on what to expect in the long term.