Rare coronavirus-related inflammatory syndrome strikes Sebastopol girl

Devi Katz and her 2-year-old daughter, Alma, were recently standing in line at the post office in Sebastopol when the toddler began screaming, “No shot, no shot!”

In Alma’s eyes, Katz saw the lingering fear and trauma from her hospital treatment over the summer for a rare coronavirus-related condition in young children that causes inflammation of their internal organs.

To Alma, the post office line could have led to the Oakland pediatric intensive care unit where she spent nine days in August. The queue also represented going for more blood tests, echocardiograms to check her heart and the shots of blood thinner her parents had to give her twice a day after she came home from the hospital.

“I just had to walk out of the line and say no, we’re not getting a shot I’m just mailing a package,” Katz said. ”And then I just realized, I think it was the environment, kind of sterile, and there was a line. We don’t go really go anywhere these days, except for the hospital for (her) blood tests.“

Before their daughter got sick, Katz and her husband, Hunter Ellis, took comfort in knowing like other parents that the coronavirus pandemic was largely sparing infants and young children like Alma. They never thought she would develop multisystem inflammatory syndrome, or MIS-C.

And why would they, since the serious condition only has been diagnosed 1,163 times and led to 20 deaths in the United States from May through Oct. 30, according to the Centers for Disease Control and Prevention. But medical experts fear more cases are likely as COVID-19 resurges.

The illness causes inflammation of different parts of the body, including the heart, lungs, kidneys, brain, skin, eyes or gastrointestinal organs. Medical experts do not know what causes the illness, but it’s clear many children who develop it either had contracted the pandemic disease or had been exposed to someone with COVID-19. The average age of children that come down with it is 8.

The symptoms of the inflammatory syndrome start for most children two to four weeks after they’ve been infected by the coronavirus. Although it can be deadly, most children diagnosed with it have gotten better with proper medical care. That’s the message Katz and Ellis want parents to hear.

With coronavirus cases surging in California and across the country, Katz said there likely will be more cases of MIS-C, and parents need to know the symptoms.

"I’m also realizing that I’m telling the story as a way to heal myself from trauma of the whole experience,“ said the 32-year-old mother who was a piano teacher before her daughter was born. ”Fearing that I was going to lose Alma to MIS-C is the worst pain I’ve ever felt. And I wouldn’t wish it on anyone else.”

Delayed effect

Ellis fell ill around July 10, after a number of workers at the Healdsburg textile business he runs contracted COVID-19. He figured it was only a matter of time before he got it. Indeed, he was tested and learned he was infected. Katz didn’t bother getting tested since the young family was isolating together at home in Sebastopol.

“Alma did not get sick the whole time,“ Katz said of when her husband grappled with the virus. ”She had one day where she took like a really long nap, like she was fighting something, but then she was OK. We felt really lucky that she wasn't sick with COVID. But you know, we all hear it's really common that kids are fine.“

Then a month later, Alma started getting persistent high fevers unlike any she’d ever had. Her mom and dad had several video consultations with Kaiser Permanente medical staff about their daughter’s situation. Meanwhile, Alma’s health worsened, with continued fevers, skin rashes on her face and body, lethargy and vomiting.

Katz thought something was “lost in translation” during the video consultations, and doctors ultimately diagnosed Alma with roseola. It’s a viral illness that usually affects children by age 2 and is characterized by days of fever followed by body rashes.

By Aug. 15, the couple took her to Kaiser’s emergency department in Santa Rosa. A physician there, Katz said, concluded Alma didn’t have MIS-C because it was too late for the condition after her COVID-19 exposure. Doctors gave Alma fluids and sent the family home. Her parents hoped for the best.

However, the next morning Alma was “even more limp, curled up on the couch, like someone was dying. She couldn’t move; she wouldn’t eat or drink or talk to us. It was like she was regressing,” Katz said. The nearly 23-month-old toddler had stopped walking, talking and “needed to be held and was just draped over me, with no strength,” her mom recalled.

That morning Katz and Ellis rushed Alma back to Kaiser’s Santa Rosa emergency department. A medical team realized the little girl had significant inflammation and finally diagnosed her with MIS-C. By 6 p.m., the family was in an ambulance bound for Kaiser’s Oakland medical center, where they have an infectious disease team that can treat the illness.

The mystery illness

The first reports of MIS-C, which emerged in Europe in April, described a unique syndrome triggered in children by COVID-19 about a month after contracting the virus, said Dr. Tara Greenhow, regional lead of pediatric infectious disease at Kaiser Permanente Northern California.

Greenhow, who treated Alma, said much remains to be learned about the syndrome and its genetic characteristics. She said the appearance of the condition is not related to the severity of a child’s initial bout of COVID-19. In fact, the doctor said the vast majority of children who’ve had MIS-C had minimal to no symptoms after their coronavirus infections.

Greenhow said children with it “more or less” usually have a slate of symptoms, including fever, abdominal pain, vomiting, diarrhea, rash, bloodshot eyes, neck pain, fatigue. There’s also related neurological symptoms, such as headaches, confusion and fainting, she said.

Part of its clinical definition is that organ inflammatory syndrome requires hospitalization, Greenhow said, noting the vast majority of children suffering from it do “exceedingly well” once they’re hospitalized.

Alma’s condition improved following her treatment at Kaiser Oakland’s pediatric intensive care unit, where the toddler received intravenous immunoglobin and steroids. Immunoglobin is also used to treat Kawasaki disease, which is inflammation in the walls of some blood vessels and most common in infants and young children.

“When I met (Alma), she was quite sick. Fortunately for all of us, she made such a complete recovery,” Greenhow said.

False impression of COVID-19

Dr. Kismet Baldwin, Sonoma County’s deputy health officer, said she’s aware of a second case similar to Alma’s in the county, but didn’t have details.

Many people have the false impression children can’t contract COVID-19, Baldwin said.

“They can absolutely get COVID-19; there’s been an increasing number of cases in children across the United States over the last couple of months,” she said.

Since the pandemic arrived in mid-March, about 347 children in the county under 5 had been infected by the virus as of Friday, according to local public health data.

Although most children do not become as acutely ill as older people or individuals with underlying health conditions, certain children do suffer severe health outcomes from the virus.

Every child, however, that develops MIS-C “ends up in the hospital and that’s something you don’t want any children to have to do. ... So it’s serious, and they can potentially have long-term effects, too,” Baldwin said.

More children at risk

According to data from local and state health departments across the country compiled by the CDC as of Oct. 31, states with more than 50 children that have had the inflammation syndrome after a COVID-19 infection are: California; Texas; Florida; Georgia; New Jersey; and New York.

The average daily number of national MIS-C cases saw two peaks since the pandemic started. One came before mid-May when average daily cases reached 16 and again just before mid-August, when average daily cases were 11, CDC data shows.

The rate of children contracting the inflammatory condition has declined since late summer, but Greenhow warned more cases are likely as the coronavirus spreads in California and other states.

“Now that we’re seeing a rise in cases, we can anticipate that we’ll start seeing a rise in MIS-C cases,” Greenhow said. “We’ll be seeing more of this in the winter.”

’I’m happy now’

That worries Katz, and it’s the reason she wants parents to be aware of the little-known illness among children.

Alma’s full physical recovery from the syndrome took two months. But all the hospital interventions, the blood work and twice-daily blood-thinning shots have left frustrating effects on the little girl. She’s still experiencing certain emotional triggers causing her distress, and she frequently awakens at night with nightmares.

Mostly, though, she is herself again, Katz said. Alma’s little heart is now cleared of inflammation, which her mother said was “off the charts” when she was recently in the hospital.

“I knew she had finally turned the corner for the better when we took her for a followup echocardiogram and the hematologist told us her heart was less inflamed,” Katz said. “We took her for chocolate ice cream afterward and she said ‘I’m happy now.’ ”

You can reach Staff Writer Martin Espinoza at 707-521-5213 or martin.espinoza@pressdemocrat.com. On Twitter @pressreno.