A list of seemingly disconnected symptoms turned Olivia Akkerman’s motherly worry into fear that whatever was afflicting her 8-year-old son, Henry, was rare, and possibly tied to COVID-19.
A week and two hospital visits later, the Fredericksburg mother doesn’t have many firm answers. Henry’s symptoms — fever, swelling, digestive issues, conjunctivitis — match a new and rare disease observed in children with a past COVID-19 infection, but she says that two negative diagnostic tests for COVID-19 have kept doctors from a formal diagnosis.
Whatever the source of Henry’s illness, Akkerman is among many parents in Virginia on high alert over Multisystem Inflammatory Syndrome in Children, or MIS-C, which has been confirmed in dozens of children across the country and at least one child in Virginia.
The illness is severe, and in some children, can cause multiple organ failure, heart damage and toxic shock.
“We know even less about this illness than we do about COVID-19, which we are learning a lot about every day,” said Virginia Health Commissioner Norman Oliver, who sent a letter to state doctors last week warning them of the new illness and prompting them to alert the state of any cases they encounter.
Cases of MIS-C were first reported by doctors in the United Kingdom in April, and in New York City in May, months after COVID-19 began to spread across the United States, according to the federal Centers for Disease Control and Prevention. Maryland reported its first death from the syndrome on Tuesday, that of a 15-year-old from Baltimore County.
In Virginia, state officials have confirmed just one case in Fairfax County, where a child , whose identity was not disclosed out of privacy concerns, was discharged from the hospital and is at home recovering.
Until recently, children accounted for few of the most severe cases of COVID-19 resulting from the novel coronavirus. The new illness, MIS-C, has heightened the need for vigilance among parents at a time already rife with precautions and fear.
Akkerman said Henry first began to show symptoms last Saturday, on his 8th birthday. “We were celebrating, giving him gifts, and he just said, ‘I want to sleep.’ We knew something was wrong,” Akkerman said in an interview.
Following the advice of public health officials, Akkerman weighed whether to take her son to the emergency room or an urgent care center, where their family might be exposed to COVID-19 or unnecessarily burden the health care system at a precarious time.
When Henry took a turn for the worse on Sunday, showing a fever and vomiting, Akkerman sought care at Mary Washington Hospital. While Henry was there, Akkerman said doctors observed what appeared to be conjunctivitis, swelling on his hands and legs, and an elevated heart rate.
Akkerman said her son tested negative in a diagnostic COVID-19 test, but due to his symptoms, doctors referred her to a hospital with a pediatric intensive care unit, and the family sought care at Children’s Hospital of Richmond at VCU.
There, Akkerman said her son again tested negative for COVID-19. “They eliminated all consideration for anything COVID-19 related.” Doctors there “felt it wasn’t an option because he had tested” negative, Akkerman said.
Henry was eventually discharged from VCU with a stomach flu diagnosis, and is recovering at home.
Akkerman said that at the advice of her family doctor at Mary Washington Healthcare, her son is under a nebulizer treatment at home for his breathing and will receive an antigen test for COVID-19 in the coming weeks to fully rule out the syndrome. A nebulizer is a device meant to improve breathing by turning medicine into a mist.
Akkerman said she remains concerned that her son may have MIS-C, but is confident his health will continue to improve. Still, Akkerman said she hopes other children with similar symptoms will get a closer look, and that knowledge about the rare illness continues to improve in order to more quickly diagnose it or rule it out.
VCU and Mary Washington Healthcare declined to comment on the specifics of the case.
VCU spokesman Michael Porter said in a statement that VCU, faced with a patient presenting MIS-C symptoms, would “monitor the patient and provide necessary testing and treatment.”
Porter added: “We follow the CDC’s defined criteria for MIS-C,” which includes positive COVID-19 test or known contact with a COVID-19 patient.
He said the hospital is actively staying abreast of the latest information and best practices related to MIS-C in collaboration with other children’s hospitals. Next week, its doctors are participating in a webinar with New York City hospital leaders to “learn from their experiences.”
Mary Washington Healthcare spokeswoman Lisa Henry said emergency department physicians at its health care facilities have already identified cases of MIS-C. It’s unclear if those cases were reported to state officials, who have not disclosed new known cases.
Henry said children presenting MIS-C symptoms are being referred to VCU or Children’s National Hospital in Washington.
Oliver, the state health commissioner, declined to comment directly on Akkerman’s case, but said he empathizes with families across the state who now face the possibility of their children falling ill with what he described as a “very severe illness.”
“We’re always concerned when our children are ill, and particularly concerned when they are seriously ill, as is the case with MIS-C,” Oliver said.
Oliver added that a positive COVID-19 diagnostic or antibody test is one criteria for diagnosing MIS-C, but added that known past contact with a COVID-19 case may also be used for a diagnosis.
He stressed that as health care professionals further study the syndrome, criteria for diagnosis may be adjusted to better identify cases.
For now, Oliver said parents should continue to be cautious.
“If a child has a fever, and any kind of inflammation — swelling, redness, hot skin, conjunctivitis — it’s worth taking them in,” Oliver said. “I wouldn’t write that off.”