What to know when reporting on the coronavirus syndrome afflicting kids

At the beginning of the COVID-19 pandemic, it appeared children were largely spared from the worst effects of the virus, with very few kids becoming critically ill and hospitalized. 

As the pandemic exploded, though, so did concerns about children. Along with more children than previously thought developing a severe COVID-19 infection, doctors started noticed a related inflammatory illness striking some young patients.

While multisystem inflammatory syndrome in children or MIS-C is still rare, the number of cases will likely rise as the country reopens and overall COVID-19 cases grow, said Dr. Roberta L. DeBiasi, the chief of the division of pediatric diseases at Children’s National Hospital in Washington, D.C.  DeBiasi joined New York Times health and science reporter Pam Belluck in a Center for Health Journalism “Covering Coronavirus” webinar to discuss what we know and don’t know about this baffling new syndrome and how journalists can better report on the rapidly evolving story. 

How the syndrome impacts kids

From the first accounts of an unusual illness impacting children in the United Kingdom in late April, MIS-C “has really exploded in the last month,” DeBiasi said. 

At Children’s National Hospital, an analysis of more than two dozen patients with the syndrome found a median age of 9, while COVID-19 has more severely impacted the hospital’s older children and very young populations. 

Another key difference: Just 35% of these kids had underlying conditions, lower than the rate among regular COVID-19 hospitalizations for kids.

Those who meet the diagnosis for the new syndrome are under 21 and have either tested positive for COVID-19 have been exposed to someone who had or likely had the disease in the four weeks before symptoms began. These children have no alternative plausible diagnosis and present with fever, evidence of inflammation, and a severe illness requiring hospitalization or with multisystem organ involvement.

This illness has different long-term complications, too. Of the kids studied at Children’s National, 38% had some sort of cardiac abnormality from the get-go, she said. For instance, some had an aortic aneurysm, or a ballooning of the coronary artery which can lead to scarring, blocked blood flow and higher risk of a heart attack later in life.

As with COVID-19, there’s still a lot of unknowns with MIS-C, DeBiasi said.

“That’s really a big black box and a very important one to fill,” she said.

Among the big questions: Why are some otherwise healthy children more susceptible? Is there something different in the genetics of these kids?

Doctors are also still puzzling out the mechanisms of the syndrome itself. While it’s suspected MIS-C is the result of a delayed, overexcited immune response, it could also be the case that the young patients contracted COVID-19, recovered and then got re-exposed in the community. As doctors learn more, that scenario appears less likely, in part because patients are responding well to inflammation treatments, she said.

These questions are important for vaccine design as well, she said: “We really want to really understand this immune response really well so that we can make the vaccine safe. And I know that we can do that.”

Adding a layer of complexity

These unanswered questions pose big challenges for health journalists covering the syndrome.

As with the pandemic in general, there’s been an onslaught of scientific research but many studies aren’t peer reviewed and sample sizes are typically small. Writing about children adds another layer of complexity to decisions about what to cover, said The New York Times’ Belluck.

“You don’t want to unduly alarm parents when not all the info is in, or it’s not quite strong enough,” she said. At the same time, anything that happens to children is very important, making it a “real judgement call” for the reporters and editors.

The New York Times staff was initially decided to wait and assess the situation when word of a mysterious new childhood illness first began circulating in the United Kingdom. They worried about unduly alarming people. But when a source shared they were seeing cases in the United States, Belluck began reporting in earnest.

Suddenly, COVID-19 and children had a new narrative: It became a story about what was happening within these young bodies, figuring out how to identify the syndrome early, and what larger lessons that may tell us about the way the virus works. It was a medical mystery in real time.

Build trust, verify the facts

Belluck strives to fully identify the people in her stories, which means there’s often a lot of spadework involved. She casts a wide net for sources and strives to make them feel comfortable.

If someone’s uncertain about an on-the-record interview, Belluck will ask them to have a casual conversation first in which they can ask questions or voice any concerns. Sometimes, the details they’re most worried about sharing aren’t relevant to the story and can be easily excluded.

She does a lot of listening and works hard to earn a source’s trust, she said: “It’s the opposite of a hit-and-run process; it’s a very communicative process.”

With medical stories, it’s always very important to verify key facts, rather than just take a family’s word, particularly if their experience is a big part of the overall narrative. Even if a family has a high level of medial literacy, they might misconstrue a detail the medical team found important, she said.

Belluck asks for either a patient’s medical records or to talk with the medical team. Even if she’s not able to connect with every doctor and nurse involved, her goal is to create an accurate and detailed medical narrative, enabling her to cross-check the family’s version.

With MIS-C, she makes a point to explain that we still don’t know why some kids are having these severe reactions. It’s very important to be clear with the reader and audience about what isn’t known yet, she said.

DeBiasi encouraged reporters aim to give their audiences enough information to be aware of this rare syndrome — even in kids without underlying conditions — but also to temper it with the context that vast majority of kids are going to be fine.

“It’s giving parents some sense what to look for if their child ends up being one of the relatively few cases,” Belluck said. “It empowers them, helps them understand what questions to ask their doctor, when to worry and when not to worry.”

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View the full presentation here: