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‘Living my worst nightmare:’ Indiana mother describes 13-year-old son's fight for his life against Mis-C

Posted at 7:47 PM, Feb 17, 2021
and last updated 2021-02-18 14:37:32-05

INDIANAPOLIS — At the end of January, Sue Johnson’s active, energetic and otherwise healthy 13-year-old son, Jax, was fighting for his life in the PICU at Peyton Manning Children’s Hospital.

Johnson described what happened to her son as "a mother's worst nightmare," and she says it was all because of a rare, but serious syndrome linked to COVID-19 called multisystem inflammatory syndrome in children — better known as MIS-C.

“It truly was hell. It was like I was living my worst nightmare,” Johnson said.

The mother of three said a trip to the ER for what was thought to be appendicitis, quickly turned into a diagnosis of MIS-C.

“At one point he said, ‘I don’t want to die. Mom, am I going to die? I don’t want to die,’ “ recalled Johnson her son telling her while in the hospital.

READ | Doctors see rise in COVID-19 related illness in children

Jax spent two weeks in the hospital. At one point, Johnson said doctors told her Jax was in acute heart and respiratory failure.

“I feel like we would take a step forward one day and ten steps back two hours later,” Johnson said.

The CDC reports99% of the more than 2,000 confirmed MIS-C cases nationwide had positive COVID-19 tests and with the remaining 1% exposed to the virus.

Johnson said MIS-C was something she had never heard of. She said Jax never tested positive for COVID-19 and had never even shown any symptoms of the virus, except for one time in November when he was sent home from school with a 99-degree fever. But she says a COVID-19 test after that incident came back negative.

MORE | Riley reports 'record admissions' of COVID, MIS-C cases in children

“It’s still a mystery to me how this illness could present one thing, as appendicitis, and then turn out to him being in the ICU in critical condition,” Johnson said.

While in the hospital, Johnson said a blood test showed Jax had COVID-19 antibodies.

“Each patient is just a little bit different in how they present it is a rapidly expanding field of knowledge as we see more of these patients come in,” Dr. Kay Sichting, medical director of the pediatric intensive care unit at Peyton Manning Children’s Hospital, said.

Dr. Sichting was on the team of doctors who cared for Jax, but due to privacy issues, she was not able to comment specifically on his case.

“What’s been seen is when there’s an uptick in the COVID cases, weeks later we see an uptick in the MIS-C patients,” Dr. Sichting said.

For the next several weeks, Johnson said their calendar is full of doctor appointments. Johnson said her son is expected to make a full recovery.

“People need to know that this is out there. It’s not just COVID, it can be things associated with COVID,” Johnson said.

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