Hamilton County student survives rare syndrome linked to COVID-19

Staff Photo by Matt Hamilton / Jon, Elijah and Sarah Berestecky at their home on Thursday, Sept. 30, 2021.

Ten-year-old Elijah Berestecky's arms are still covered in bruises from the dozens of needle jabs he received during two trips to the pediatrician, three to the emergency department and a three-day stay at Children's Hospital at Erlanger.

His parents can tell he's starting to feel like himself again since he was discharged and returned home a week ago - flashing smiles, joking around and playing games. They're hopeful he'll be strong enough to go back to school Monday, but he isn't ready to talk about his experience.

After nearly two weeks of back-and-forth trips to medical providers, Elijah was admitted to Erlanger with multisystem inflammatory syndrome in children, or MIS-C - a rare but serious condition that affects mostly school-age children and is associated with recent COVID-19 infection.

Like hundreds of other children in Hamilton County Schools, Elijah caught COVID-19 soon after classes resumed for the new academic year on Aug. 12.

His symptoms were mild: sore throat, headache, low-grade fever. Over the next two weeks, the Beresteckys practiced diligent infection control, and Elijah's symptoms went away. No one else in the family got infected, and Elijah and his sisters returned to school after Labor Day.

Sarah Berestecky, Elijah's mother, said everything seemed good until his fever spiked over the following weekend, much higher than before.

Her sister, a pediatric intensive care nurse in Texas, had warned her about MIS-C, so Berestecky took Elijah to the doctor that Monday. A clinician ran some tests, but couldn't pinpoint what was happening.

It took a week and a half before Elijah's condition progressed to the point that providers could confirm it was MIS-C. Berestecky said it was "complete torture" to watch her child deteriorate without knowing the cause.

At the height of his illness, Elijah endured debilitating body aches, high fever, vomiting, diarrhea and rash. Lab results and tests conducted later at the hospital revealed inflammation in multiple organ systems, including the heart, liver, skin and gastrointestinal tract. Elijah was so weak on the day he was admitted to the hospital that his dad had to carry him inside.

"We woke up, and it was so clear that he was so sick - his eyelids were swollen, he had bloodshot eyes, his whole body was in so much pain he was doubled over," Sarah Berestecky said.

Although the syndrome is rare, Berestecky said she "couldn't let go" of the idea that MIS-C was to blame for her son's ailments. She took detailed daily notes of Elijah's evolving symptoms and was proactive about seeking care, which she believes helped avoid even worse outcomes.

"It's not that I love him any more than another parent loves their kid, but I do think it helps that I just knew about this possibility and that he was exhibiting the symptoms of it," she said. "I want to bring awareness to this, and I hope that that's the message that people get, but there's this other part of the story."


Berestecky, who served as a parent representative on Hamilton County Schools' COVID-19 Task Force, said that teachers and administrators at Elijah's school, East Side Elementary, have done the best they can to protect students and staff from COVID-19 with little support from the district.

She's most frustrated by the district's decisions on mitigation measures, including a face mask requirement that allows parents to opt out on behalf of their child, effectively turning the requirement into a recommendation.

"I watched some of those talks happen. They are just too afraid to create conflict for the sake of protecting children," Berestecky said. "This is literally a consequence of an inaction."

A surge in childhood COVID-19 cases that corresponds with a return to school, fewer safety protocols and the more contagious delta variant of the coronavirus has led to the highest volume of MIS-C cases at Erlanger of the pandemic to date, according to Dr. Jeffery Bennett, a pediatric hospitalist at Erlanger Children's.

"We had a few cases with the surge of 2020, but this outbreak seems to be larger, and it's probably somewhat associated with the higher rate of pediatric COVID infections in general," said Bennett, who also helped treat Elijah.

Although vaccination is the best of several tools needed to control the coronavirus, children under 12 are not yet eligible, meaning face coverings as a source of protection from spread are more critical to them.

District spokesperson Cody Patterson did not respond to or acknowledge a series of emailed questions from the Times Free Press sent Friday, including whether district officials believe their COVID-19 policies adequately protect students and what they would like to say to families of students who have become seriously ill or died due to the coronavirus.

Shortly after Hamilton County Schools instituted its opt-out face mask policy, Tennessee Gov. Bill Lee took the idea statewide, issuing an executive order overriding all local school districts to say their face mask requirements would have to include parent opt-outs.

(READ MORE: Physicians fire back at Tennessee governor's COVID policies)

Judges in Shelby, Williamson and Knox counties have suspended Lee's mask opt-out order to protect vulnerable children whose families sued.

The judges' rulings have no effect in Hamilton County, where it was the local school district - not the governor - who offered the option for parents to decline the mandate.

The two-month period between August and September 2021 had nearly 5,000 more COVID-19 infections among Tennessee residents age 20 or under than the total during the four-month winter surge between November 2020 and February 2021, according to data from the Tennessee Department of Health.

(READ MORE: School-aged children make up a quarter of Hamilton County's new COVID-19 cases)

There have been 194 confirmed MIS-C cases in Tennessee, including one that resulted in death, since the start of the pandemic as of Tuesday - the last time the department of health updated its data on the syndrome - with 15 of those cases occurring in the previous three-week period.

Erlanger Children's, which treats pediatric patients from multiple states across the region, has treated an estimated five to 10 MIS-C patients in the past month, according to Bennett.


Researchers are trying to understand how and why COVID-19 can cause the syndrome to develop. Bennett said data from the U.S. Centers for Disease Control and Prevention show spikes in MIS-C typically occur four weeks after a COVID-19 case surge.

"It's not part of the initial infection, as far as we can tell, but it's an inflammation that develops several weeks later. The inflammation has broad effects on the body and affects multiple organs at once, and as such, it's a very serious condition," Bennett said.

MIS-C treatment involves controlling the widespread inflammation, starting with intravenous antibodies and making sure heart function remains stable. Depending on how patients respond to initial treatment, they may also receive steroid medication, as was the case with Elijah.

Patients also receive aspirin during and after their hospitalization to prevent blood clots and may remain on steroids that will be tapered off over several weeks.

Though the initial antibody treatment didn't seem to help, Elijah saw dramatic improvement with steroids and was able to leave the hospital after three days.

"We just felt very cared for and that they were going to do everything that they could to find what was going to work for his body," Berestecky said.

Bennett said Elijah's case was on the slightly milder side of typical, but he was "clearly quite ill," and he will need to be seen by a cardiologist in the coming months to check for lingering heart damage.

Tennessee children with MIS-C spend on average five to six days in the hospital, according to the health department report.

Bennett said children whose hearts are significantly affected tend to be in the hospital the longest and require the most intensive care, but he wants people to remember that MIS-C is rare, and most children who develop a fever several weeks after COVID-19 have something else.


When the pandemic forced schools to send children home in March 2020, Berestecky opted to homeschool her three children, ages 9, 10 and 11. She was nervous about how the district would manage COVID-19.

(READ MORE: As COVID-19 cases trend lower in Hamilton County schools, families, disability advocates discuss mask opt-out policy)

But as she watched from afar, she said she was impressed by the schools' mitigation measures, which included a universal face mask requirement and a phase tracker that monitored key data metrics to determine whether it was safe to conduct in-person learning.

Homeschooling proved difficult for the working parents, and the Berestecky children missed their friends and favorite activities.

"We kept them physically safe, but mentally, we had to work through all of those emotions that would come up throughout the school year," Berestecky said.

By the spring, the pandemic was improving, and both parents got vaccinated, and Berestecky expected schools to keep getting safer.

But this year, there are fewer protections in place. Parents can opt out of the mask mandate, and there is no phase tracker to guide decisions about school openings and closings based on community spread of the virus.

Berestecky is wondering whether she made the right decision to send her children back. Although there's no way to know for sure where Elijah became infected, all signs point to school, given that no one else in the family has tested positive.

Elijah's on a continued steroid regimen to keep the inflammation at bay as his body heals. He won't be able to participate in recreational activities or sports for three to six months, his parents said.

In addition to the concern of possible heart damage, other long-term effects of MIS-C are unknown, and the mental toll of MIS-C weighs heavy on Elijah, his parents and his two sisters.

"We'll have to process and work through as he continues to heal," Berestecky said. "To know that there's this virus out there that's killed all these people, and you had it, and then you got really sick from it - to process all that in a little body and mind, it's just a lot."

Contact Elizabeth Fite at efite@timesfreepress.com or follow her on Twitter @ecfite.