SC teen went into near organ failure tied to COVID. How it slipped past multiple tests
After multiple misdiagnoses, numerous hospital visits, and an intensive care unit stay, the teenager grappled with the possibility of organ failure.
ROCK HILL, S.C. — Allison Dove intently watched as doctors and nurses surrounded Preston, her 14-year-old son. He was stretched across an intensive care unit bed at Atrium Health’s Levine Children’s Hospital in Charlotte. Preston could barely open his eyes. His heart rate was climbing. His skin was yellow.
One of the doctors walked over to Preston’s parents.
“I need you to understand this is really serious,” the doctor told them.
Allison, from Rock Hill, glanced at her son behind the doctor. He was connected to multiple machines, and on one of them, she noticed Preston’s blood pressure was plummeting.
“In a matter of hours, he could be on life support,” the doctor continued. “He could be in a coma.”
The doctor explained that Preston’s organs, specifically his heart, liver and kidneys, were at risk of failing.
Allison felt her throat tighten.
With the little strength he had, Preston lifted his head.
“Did he say kidney failure?” he asked. His voice quivered.
Allison cried.
“It’s one of those situations that you just never think you’ll be in,” Allison recently told The Herald.
The week before Preston was admitted to the ICU, Allison and other family members took Preston to multiple doctor’s offices and hospitals in Rock Hill and Chester. He was tested for COVID-19, flu and strep.
All negative.
Each time, the medical staff sent Preston home, told him to rest and take a fever reducer.
He did. Nothing changed. The blotchy red rash on his legs wasn’t going away. He continued to throw up any time he tried to eat or drink. His heart rate was only rising.
“He could not even drink water without throwing up,” Allison said.
She knew Preston’s illness was serious and, as the ICU doctor confirmed, Allison was right.
Shortly after Preston arrived in Levine’s ICU, he was diagnosed with multisystem inflammatory syndrome in children — known as MIS-C. It’s a rare condition linked to COVID-19 that can cause various body parts to become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs, according to the state’s Department of Health and Environmental Control.
Identifying COVID, MIS-C link
U.S. health officials are working to understand MIS-C and who is likely to get it, according to the Centers for Disease Control and Prevention.
Children typically start to experience MIS-C symptoms two to three weeks after a coronavirus infection, according to DHEC. However, some children don’t show COVID-19 symptoms while infected and may not know they had the virus, according to DHEC.
Out of the 6,851 MIS-C cases reported in the U.S. as of Jan. 31, 2022, 98% of patients had a positive COVID-19 test, and the remaining 2% had contact with someone with COVID-19, according to the CDC.
While in the Levine ICU, Preston tested positive for COVID antibodies. Before that, he had multiple tests that did not register positive results for COVID-19, Allison said. However, his younger brother did.
In late November, Preston started to feel sick. At the time, Allison’s eight-year-old son, Beckham, wasn’t sick. She got both her sons tested for the virus at a local doctor’s office.
Beckham tested positive for COVID-19, but Preston’s test came back negative, she said. Since Beckham’s test was positive, the doctor suggested that Preston’s result was likely a false negative, Allison said.
“Preston was the one who was sick,” Allison said “Beckham wasn’t, so I think we missed the window for him to get a positive test.”
Soon after, Allison also got sick, but all three recovered, she said. Then, a month later, Preston started to feel sick again, she said.
At first, his symptoms weren’t too alarming, Allison said. He had a fever. He was sleepy. And he was throwing up. But Preston’s fever was the first indicator that something was seriously wrong, she said.
“Usually even when you’re really sick, (the fever) will come and go,” she said. “The only way it would come down at all was to rotate Tylenol and Motrin.”
A persistent fever is one of the key symptoms of MIS-C, according to the CDC.
A few days later, Preston developed a rash on his legs and his fever peaked at 106 degrees, she said. He threw up for about five straight days and, at one point, he developed a urinary tract infection because he had become severely dehydrated, she said.
Preston got worse, so about a week after his symptoms started, Allison decided to take him to Atrium Health’s emergency room in Steele Creek.
“I felt like every 10 minutes his blood pressure was just going down,” Allison said. “His skin was splotchy. His limbs were blue. His heart rate was getting higher.”
The emergency room nurses struggled to get an IV in Preston’s arms because of his dehydration, Allison said.
“They had to end up putting him upside down on the bed and use an ultrasound to get the second IV in his neck,” she said. “He was so pale. He looked like he was dying.”
Hours later, Preston was transported to the ICU at Levine. At that point, his blood pressure was reaching near-death levels, Allison said.
“Honestly, in that moment, although I was so terrified, seeing the care he was receiving, I somehow felt so confident in them because for a week, we had been getting thrown around and nobody knew,” she said. “All of a sudden, these people knew exactly what to do to help him. I cannot say enough good things about Levine, especially the ICU.”
The ICU staff told Allison they were working to determine whether Preston had MIS-C or sepsis, she said.
Allison said that was the first time she had heard of MIS-C.
Since Preston’s previous coronavirus tests had been negative, the ICU team needed to see if Preston had COVID antibodies, she said.
“I thought once you get through your two to three weeks of COVID, you’re good,” she said.
Preston tested positive for COVID antibodies, which confirmed that he had MIS-C, Allison said.
“Everything was shutting down,” she said. “It was just so scary. They had to put a line in his artery to monitor his blood pressure second by second.”
‘You’ve got to be kidding me’
The ICU staff got Preston’s vital signs under control, and within three days, he was moved out of the ICU. By the time Preston started to feel better, he had lost about 20 pounds, Allison said.
“Once he could eat, he was like, ‘I’ve got to have some Chipotle’ because we don’t have a Chipotle in Rock Hill, so he’s always wanting Chipotle,” Allison said. “I was like ‘OK I promise we’ll get you some Chipotle.’ He ate two burritos a day until we left the hospital.”
After a week in the hospital, Preston went home in mid-January.
However, in early February, Allison said she noticed that Preston was starting to develop another fever and his heart rate was elevated.
One of her neighbors offered her an at-home COVID-19 test.
“I thought we were just wasting a test, but then it popped up positive,” she said. “I was like, ‘You’ve got to be kidding me.’”
When the at-home test came back positive, Allison took Preston back to the hospital.
“The doctor there said he thought I made the right call,” Allison said. “I told him, ‘Honestly I may be jumping the gun by being here, but I didn’t think to ask what if he got (COVID) again less than a month after he was discharged from the hospital.”
After a few hours, Preston went home.
“The doctor was like, ‘Just keep an eye on him and come back if anything changes,’ but so far he’s been OK,” Allison said.
Few vaccinated among MIS-C cases
Before Allison and her sons got the coronavirus last year, they had not received the COVID-19 vaccine.
Allison said she had a blood clot several years ago, and with reports that a few people developed blood clots after receiving Johnson & Johnson’s vaccine, she was hesitant.
As of Feb. 17, more than 18.3 million doses of the Johnson & Johnson vaccine have been administered in the U.S., and there have been 57 confirmed reports of people who later developed blood clots after getting the vaccine, according to the CDC.
“The reasons we didn’t get it were not like some,” she said. “It wasn’t like the conspiracy side of it. We just wanted to see what happened to others first.”
Allison said that once Preston is fully recovered, she and her sons will get vaccinated.
“My opinions and feelings necessarily about the vaccine haven’t really changed, but at the end of the day ... you just have to weigh your risks, and we can’t do that again,” she said.
Since 2020, Levine has treated 118 pediatric patients with MIS-C, an Atrium spokesperson told The Herald in an email. While some of the children had received the first dose of the COVID-19 vaccine, none of the 118 children were fully vaccinated, the spokesperson said.
However, at the time many of the children were sick, the vaccine had not been authorized for children, the spokesperson said. On Oct. 29, the U.S. Food and Drug Administration authorized emergency use of the Pfizer-BioNTech COVID-19 vaccine in children ages 5-15 years old.
Allison said she’s worried Preston could get MIS-C again, so she wants to ensure he’s protected.
“His body was really strong the first time right, but now his organs are trying to repair themselves,” she said. “If he gets it again, his heart may not be able to take it.”
As of Feb. 24, 211 cases of MIS-C have been reported in South Carolina, according to DHEC. The health agency reported its first confirmed MIS-C case on July 12, 2020.
Months later, the health agency reported that a 17-year-old died from MIS-C on Jan. 27, marking the state’s first death due to the condition. In South Carolina, three children have died of MIS-C, a DHEC spokesperson told The Herald in an email. In the U.S., 59 children have died from the condition, according to the CDC.
Of the 211 MIS-C cases reported so far in South Carolina, three children were considered fully vaccinated, the DHEC spokesperson said.
‘It’s been so hard’
When Preston first got home, he struggled to stand, but now he’s stronger, Allison said. In early February, he started doing some schoolwork.
“I’m just hoping to get him healthy and I’m doing the best I can, but I’ve had to do homeschool and all that stuff on top of everything else,” Allison said. “It’s been so hard to keep it all straight, but we haven’t drowned yet.”
Although Allison was, at first, against it, her sister started a GoFundMe page in January to help with some of Preston’s medical expenses. So far, people have donated more than $4,000.
“After 14 years of doing it alone and never asking for anything, I was like, ‘I don’t know that I can recover from this without (financial help),’” she said. “I almost couldn’t look at (the GoFundMe) for the first two days because my stomach was in knots. I couldn’t believe people could be so selfless.”
The CDC is evaluating MIS-C cases to understand specific risk factors, the progression of the illness, and how to better identify and distinguish MIS-C, according to its website.
Allison suggested that parents look at the research already published on MIS-C to learn about the condition and understand its possible symptoms.
“Preston wasn’t treated until a week after he started having symptoms,” she said. “Had I known what to look for ... he might not have had any damage done to his organs.”
Last week, Preston had an appointment with a cardiologist. An ultrasound of his heart came back normal, Allison said. She still worries about the long-term effects of MIS-C, but for now, she said she’s thankful.
“Just to watch everything he had to go through and just how tough he was, it was a lot,” she said. “I am not going to say I’m thankful it happened because I’m definitely not thankful it happened, but it gives you a different outlook on life — especially as a parent.”