Surviving MIS-C, a rare inflammatory syndrome linked to COVID-19 in children

Since the start of the COVID-19 pandemic, doctors have found some things about the new coronavirus baffling. University of Chicago Medicine Comer Children’s Hospital physician Julia Rosebush, DO, recalls that was the case when treating the 10-year-old boy whose life she helped save in May.

“I remember him saying, ‘I’m hungry, I want to eat,’” said Rosebush, an expert in pediatric infectious diseases. “Initially, he didn’t appear as sick as his test results indicated.”

Joshua Smith was very sick, however. Prior to his hospitalization, he’d had a fever for three days that didn’t respond to acetaminophen.

“I had that feeling that something wasn’t right,” said his mother, Lagwena Smith.

Her son was transferred to UChicago Medicine from another hospital with a fever and low blood pressure, a dangerous sign that his heart was not working well and that he could slip into shock.

Doctors quickly learned that Lagwena had recovered from COVID-19 roughly a month earlier. Joshua tested negative for an acute COVID-19 infection, but it would take several days to receive the results of a test to determine whether he’d previously been infected and recovered.

Equally puzzling to Rosebush was that Joshua’s condition improved after receiving intravenous immunoglobins meant to combat inflammation — but then deteriorated again.

“We really struggled to understand what could be fueling his illness,” Rosebush recalled.

At this point, Joshua’s care team realized they might be witnessing their first known case of a new inflammatory condition they’d learned about from colleagues in New York and Europe, places hard hit by COVID-19: multisystem inflammatory syndrome in children (MIS-C).

MIS-C is a rare, potentially severe complication linked to COVID-19 that some children develop. Symptoms of MIS-C include a rash, fever, abdominal pain, vomiting, diarrhea and fatigue. Untreated, MIS-C can be life threatening because it causes inflammation in the heart and other organs, as well as welling of blood vessels.

“The issue is not the COVID-19 making the child sick, but rather the patient’s immune system overreacting,” said Melissa Tesher, MD, a pediatric rheumatologist who also treated Joshua.

Test results eventually showed that Joshua had antibodies to the virus — meaning he had once been infected.

Joshua’s Comer Children’s care team included physicians in rheumatology, infectious diseases, cardiology, hematology, intensive care and hospital medicine. It proved critical that some of them had been participating in international, national and local Zoom meetings with other physicians treating COVID-19.

“It’s been such an incredible learning experience,” said Rosebush. “No one specialty can do this alone, and for that we’ve become stronger.”

The team decided to treat Joshua with corticosteroids, medications that help reduce inflammation. He was also given anakinra, a medication that can help decrease an overactive immune system, as well as a blood thinner to counter the increased risk of blood clots faced by patients with COVID-19.

“As we’re learning more, we’ve been giving steroids right at the beginning for MIS-C patients,” said Tesher, who along with Rosebush was involved in creating state guidelines on how hospitals should diagnose and treat MIS-C.

As of August, UChicago Medicine had treated seven children with MIS-C. Like most patients with MIS-C, all are fully recovered. Although the syndrome is exceedingly rare, Rosebush expects to see more cases if COVID-19 continues to spread and a definitive link with the virus is established.

“It remains to be seen what, if any, long term effects there are from MIS-C,” said Rosebush. “But children have an innate ability to rebound. They’re resilient.”

As for Joshua, he is back at home in the south suburbs and doing well. His recovery is being monitored by his physicians, who have asked him to take a break from sports as they ensure his heart has fully recuperated.

“His appetite is good, his attitude is good,” said Lagwena. “To me, he’s the old Josh.”