N.Y. Mom Describes Son's Battle With Pediatric Multi-System Inflammatory Syndrome

At least 150 children in the United States are now believed to have contracted pediatric multi-system inflammatory syndrome, a new illness thought to be connected to COVID-19.

The United Kingdom, France, Spain and Canada have also sent out warnings about the disease. In response, the Centers for Disease Control and Prevention released a list of criteria for doctors to use to diagnose it: fever, inflammation, two affected organs and either a positive test for COVID-19, a positive antibody test or a known exposure to COVID-19 four weeks prior to diagnosis.

Among the children who have contracted the illness is Bobby Dean, who was recently profiled by the Associated Press. The 9-year-old from Hornell, New York, started showing symptoms weeks after his mother, Amber Dean, recovered from COVID-19.

“We’d been back to work for over a week when Bobby got sick,” Amber Dean says. “It started with what we thought was a tummy bug, and it just got progressively worse.”

Within a day, he was complaining of severe abdominal pain and couldn’t keep any food down, she says. When the family brought Bobby to the local emergency room in Hornell, doctors there suspected that he was suffering from appendicitis. But the CT scan showed no evidence of that, and he was sent home with instructions to contact them if his symptoms persisted. He was also given a 24-hour COVID-19 test.

That night, Bobby’s pain and fever intensified, and Amber Dean and her husband were instructed to head to Strong Memorial Hospital in Rochester. The 90-minute drive was difficult, she says.

“He groaned after every bump,” she says.

By the time they got to the hospital, Bobby’s symptoms also included severe dehydration and red eyes, Amber Dean says. There were also concerns about his heart.

"It was beating rapidly ... as though he was running around when he was just sitting,” she says.

His dehydration was so severe that his urine was “like syrup," she says. Doctors told her that “if he had gone another 24 to 48 hours [without treatment], we might have lost him.”

Bobby was admitted to the pediatric intensive care unit where he was hooked up to a heart monitor, she says. He was also given a peripherally inserted central catheter [PICC line], a large IV inserted into the neck with the catheter tip positioned in a large vein that carries blood into the heart.

After four days in intensive care, Bobby was moved into a regular ward. Amber Dean says it was hard to watch her young son go through this, though she says she’s heard of other kids who have been through even worse.

“What he had I would not recommend because it’s not easy for a parent to watch," she says. "He’s hooked up to all these machines and you’re just there. You’re not able to do anything.”

While in the ICU, Bobby was given daily COVID-19 tests, she says. The first two were positive, and the second two were negative.

His doctors said the test results indicated Bobby was at the end of his infection, which was consistent with pediatric multi-system inflammatory syndrome. The disease seems to strike kids who have either recovered from mild or asymptomatic COVID-19 or are at the tail end of their infections.

The positive COVID-19 test results clearly indicated that it was this new syndrome that had stricken her son, Amber Dean says.

"Then they kind of explained to me a little bit about what it was because before that I didn’t know anything about it,” she explains.

Amber Dean says her pediatrician has no answers about why Bobby — who has no known pre-existing conditions — might have contracted this illness.

“He said they really don’t know why some kids will get it and some kids won’t," she says. "They’re still learning.”

The experience has left the Dean family cautious when it comes to returning to "normal" activities, Amber Dean says. If businesses start opening up, they might do some small family trips, but they are not planning any major gatherings and are not even considering summer camps.

She says she’ll be keeping her three children close and will make sure that someone is watching her kids at all times.

"I don’t want my younger two to go through this," she says. "It was hard enough for the older one. I can’t imagine it with my young ones.”

Karyn Miller-Medzon produced and edited this interview for broadcast with Tinku Ray. Miller-Medzon and Samantha Raphelson adapted it for the web.

This article was originally published on WBUR.org. [Copyright 2020 NPR]