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As cases of MIS-C rise, mom shares 12-year-old's experience with illness

"You can have a very perfectly healthy child and MIS-C can set in on them for no rhyme or reason. COVID does not have preferences."
/ Source: TODAY

In December 2020, Rohen Stamey, 12, tested positive for COVID-19, but he experienced very few symptoms. A month later, Rohen became very ill with multisystem inflammatory syndrome in children (MIS-C). Until Rohen fell ill, mom Nickey Stamey had never even heard of it.

“I had no idea what was happening,” Stamey, 41, of Burnsville, North Carolina, told TODAY. “He was just so sick.”

About a month after having a mild case of COVID-19, Rohen Stamey, 12, became very ill. His family later learned he had MIS-C, a rare complication of COVID-19 in children. Courtesy Nickey Stamey

Stamey is sharing Rohen’s story so other parents know about MIS-C and take precautions to prevent the spread of COVID-19.

“Our family has shouldered tremendous pain and loss because of COVID. We just don’t want any other family to have to go through it,” she said. “You can have a very perfectly healthy child and MIS-C can set in on them for no rhyme or reason. COVID does not have preferences.”

High fever, erratic heart rate

Stamey’s mother passed away on Dec. 8, 2020 due to complications related to COVID-19. Then 10 days later, Rohen and Stamey became sick. Her son’s symptoms were short lived. After a day, he seemed fine.

“He was very mildly symptomatic,” Stamey explained. “When Rohen got sick he was just glassy eyed and had a slight fever for a day and that was it.”

A month later on Saturday, Jan. 16, Rohen suddenly became surprisingly sick.

“His fever was so high I actually thought my thermometer was broken,” she said. “(But) he responded to Tylenol."

The next day, his fever continued and he became more lethargic. By Monday, he was vomiting. They visited the pediatrician who thought they might want to manage his symptoms at home after testing Rohen for viruses, such as influenza and adenovirus.

“He hadn’t even mentioned MIS-C. I don’t know if he had not seen any patients with it,” she said. “What he did say was ‘I don’t think this is COVID.’”

But after one night home, Rohen worsened and Stamey again called the pediatrician, who instructed them to go immediately to the hospital. That’s when Stamey heard MIS-C.

“The hospitalists were saying, ‘We’ve run a bunch of lab work and there’s this thing called MIS-C and his bloodwork is checking off some of the boxes for that,’” she said. “Rohen just took a very sharp downward turn. His fever was really high. His heart rate was crazy. His blood pressure plummeted. The vomiting and the diarrhea, it was exponentially worse.”

When Rohen Stamey first became sick, his temperature was so high that mom Nickey Stamey thought her thermometer was broken. Courtesy Nickey Stamey

Doctors began treating Rohen for MIS-C.

“His heart began to get fluid around the pericardium sac and some of the tissue was breaking down. He could not breathe,” she said. “He was on the highest level of oxygen.”

What's known about MIS-C

Last spring, doctors first started observing children with a severe inflammatory response after having a COVID-19 infection, but there were many unknowns. Since then, experts understand more, yet still crave more data about it.

“We have a better handle on what this looks like and a little bit of the spectrum of disease. We know a little bit more about treating it, which is also really helpful. It was really a black box in the spring,” explained Dr. Mary Beth Son, director of the rheumatology program at Boston Children’s Hospital. “I don’t think we know yet the risk factors for why some children get it and others don’t.”

Recent research suggests that children between 6 and 12 years old and children of color are more likely to develop MIS-C, but the reasons why are still unclear. The National Institutes of Health is enrolling patients in several studies to gain a better understanding of MIS-C, including trying to figure out why these children seem more likely to develop it.

“A major goal of these linked studies is to be able to predict who is at risk. If you know who's at risk, then you can monitor them much more closely and anticipate being able to treat them,” Dr. Diana Bianchi, director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development and co-chair of CARING for Children with COVID, told TODAY. “Children turn on a dime. They're outside playing one minute, and the next minute they're in cardiac shock.”

Parents commonly hear that COVID-19 isn’t as serious for children and in some ways that’s true: According to latest statistics released by the American Academy of Pediatrics, children accounted for 1.3%-3% total reported hospitalizations, and between .1%-2.2% of all child COVID-19 cases resulted in hospitalization. Still, according to the Centers for Disease Control and Prevention, 2,060 children have developed MIS-C and experts are still determining how many develop long-haul symptoms.

“Children with COVID is 13% of the total cases and that percent continues to go up and the cases of MIS-C continue to go up,” Bianchi said. “Children are still getting infected. The numbers are going up.”

While most of Rohen Stamey's 10-day hospital stay felt scary for his mom, he has recovered and returned home. Though, he still needs some medications and cardiac rehab to continue healing. Courtesy Nickey Stamey

While most children with MIS-C need to be hospitalized and some even require a stay in the intensive care unit, they do recover. Though the long-term impact of MIS-C and COVID-19 remains unknown, which is why NIH researchers hope to follow children for five years.

“They do tend to develop a heart failure or shock or inflammation of the heart,” Bianchi said. “But the good news is, in the months since last spring there's a better sense of what's going on. Most of these children are in the hospital for about a week, and then they recover.”

Son said children with MIS-C often experience a lot of abdominal pain and distress, including diarrhea and vomiting. Though a lasting fever is often the indicator that something is amiss. Symptoms normally start about two to four weeks after having COVID-19.

“If the timing is right and their children are febrile with some of the signs and symptoms then parents should really bring them into the pediatrician sooner rather than later,” Son said.

Life after MIS-C

Rohen spent 10 days in the intensive care unit. At times, it didn’t seem like he knew what was happening.

“My biggest fear was him dying,” Stamey said. “The doctors were always leaving it at ‘This is new and we don’t know a lot’ and that was really exasperating.”

Nickey Stamey is sharing her son's experience with MIS-C so other families recognize it. Courtesy Nickey Stamey

After halfway through his stay, doctors knew Rohen would be OK, but added that “he has a long road ahead of him.” Rohen will have ongoing cardiac care and is taking various medications.

“He’s not able to run or exert himself. He can’t get his heart rate up. So, he’s missing soccer season and he’s missing interaction with friends,” Stamey said. “As a mom it’s hard to see your kid go to the doctor’s office and have to go straight back indoors.”

Rohen jokes often, loves animals, is articulate and creative and is “always the bright spot in the room.” It was tough to see his light dim, but Stamey says his personality is shining through more. It's unclear how long he'll need therapy and medications.

Stamey said their family took many precautions to avoid contracting COVID-19, yet they still got it. She hopes others take precautions to slow the spread of the virus in the spirit of caring for others.

Nickey Stamey feels grateful that her witty, articulate, creative, loving son Rohen is doing better after a scary experience with MIS-C.Courtesy Nickey Stamey

“It’s not a hoax,” she said. “Let’s wear the mask and wash our hands.”