SALT LAKE CITY — Late in October, a healthy, athletic 12-year-old Madilyn Dayton woke up with a headache “and just body aches all over.”
“And then like two to three days later I couldn’t walk and I wouldn’t eat, and then I started getting rashes all over my body, and that’s when I knew it wasn’t just normal sickness,” Madilyn recalled during a news conference Monday on how children are affected by COVID-19.
The next day “I couldn’t move at all. My head, I couldn’t move it from side to side. I was just stuck. And then, I remember my mom driving me to the hospital and taking me to this room, and I woke up in the ICU the next morning, and that’s all I really remember,” the 12-year-old said.
After seeing doctors over telehealth during the first few days of Madilyn’s sickness, her mom knew she needed to take her to a hospital immediately.
Madilyn was diagnosed with multisystem inflammatory syndrome, or MIS-C, a rare condition that arises in some children after COVID-19 infections and most commonly causes heart issues.
The U.S. has confirmed nearly 1,200 cases of the syndrome, which has caused 20 deaths, according to the Centers for Disease Control and Prevention.
“And that was where I got stumped,” as no one in the family had been sick, said her mother, Marilyn Dayton. But the 12-year-old tested positive for coronavirus antibodies.
Dayton drove Madilyn from their home in Cokeville, Wyoming, to Primary Children’s Hospital, where she was treated in the ICU before she could return home. She hasn’t, however, returned yet to life as usual.
“Now, I can’t do sports anymore, and that’s really hard. I can’t go to school, I’m doing online school right now,” Madilyn said.
Madilyn wasn’t the first patient doctors at the Salt Lake City hospital had seen with the condition, and they don’t think she’ll be the last.
Utah health officials, meanwhile, confirmed another 1,971 new COVID-19 cases, five deaths and a record 503 current coronavirus hospitalizations on Monday.
Multisystem inflammatory syndrome, treatment
“MIS-C can affect almost any organ system of the body, and most kids with MIS-C have been previously healthy,” said Dr. Dongngan Truong, a pediatric cardiologist. She said the cardiovascular system is one of the most commonly affected.
Some children — older children particular close to Madilyn’s age — who have mild or asymptomatic active infections develop multisystem inflammatory syndrome several weeks later, said Dr. Jason Lake, a pediatric infectious disease specialist. On average, there’s a four-week delay in acute infection and the onset of MIS-C, according to Lake.
He said doctors have treated 17 cases of the syndrome so far at Primary Children’s Hospital, and he expects the hospital will see rising numbers due to the high rate of infection the U.S. is seeing now.
“We anticipate that in the coming weeks we will definitely more than double the cases that we have seen thus far today,” Lake said.
Dr. Erin Treemarcki, a pediatric rheumatologist, said the most common symptoms of MIS-C include fever, stomach ache, vomiting, diarrhea and rashes. The syndrome does not look like an acute COVID-19 infection. It does, however, resemble other infections like autoimmune or autoinflammatory conditions, or even appendicitis, Treemarcki said.
More than half the children with MIS-C end up in the ICU, where the average stay is five days, according to the doctor.
“Some good news is that we do have treatments for MIS-C to help with the inflammation, and most children and young adults do respond well to treatment,” Treemarcki said.
Doctors use medications that suppress the immune system to reduce inflammation, she said, as well as steroids in some cases. While on those medications, children are at increased risk for infection. Therefore, they aren’t encouraged to immediately return to school or other athletic activities, Treemarcki said.
About 50% of kids with the syndrome experience shock or very low blood pressure, and about 40-50% experience decreased heart function or “squeeze of the heart,” Truong said.
“And so kids with MIS-C can actually be really sick and need medications in the intensive care unit to help augment the blood pressure or help with the squeeze of the heart itself,” Truong said.
Doctors also observe leaky valves and fluid around the heart. Some kids have enlargement of the coronary arteries, according to Truong.
Some symptoms of MIS-C are similar to that of Kawasaki disease, but it’s unknown to what degree Kawasaki disease and MIS-C are similar, Truong said.
“And at this point we don’t know why some kids have such profound involvement of the heart in MIS-C,” she said, but many have improved heart function when leaving the hospital. The long-term effects are unknown, she said, which is why they will all receive outpatient follow-up care and observation.
Kids who have decreased heart function need to stop all competitive sports or strenuous activity for three to six months, she said, to give the heart time to heal and to assess for long-term damage. Scarring of the heart can lead to serious issues including abnormal heart rhythms, according to Truong.
‘I had no idea kids would be affected’
“Honestly, I thought we were social distancing by default. We don’t have a lot of people in our communities and in our schools,” Dayton said. “I thought I was taking precautions, I thought I was doing everything I could to protect my family.”
The experience was a call for her to “step up my game.”
“I need to help my kids and help others realize that we can all improve, and that we can all take better precautions and take this serious,” the mom said.
“I know it’s been hard. ... I didn’t know it could have an effect on kids like this. I thought it was those in certain categories that were at high risk, and I had no idea that kids would be affected and be as sick as she was. And the way that it progressed was so fast, that’s what threw me off. And it was about the third day where it didn’t start to turn the corner,” Dayton said.
“I’m so thankful for Primary Children’s, for these doctors have worked on her and for the knowledge that they have. And I know without a doubt that she would not be sitting by me today if it weren’t for their intervention and for them caring for her,” the mother said.
Addressing those who don’t believe in wearing masks and think rights are being taken away by restrictions, or that the disease is no worse than the flu, Dayton said “we have lived the experience, and so a lot of opinions don’t matter to me anymore. I need to up my game, and I need to improve. And the one element and the piece of the puzzle that I think is missing in COVID:
“We need to care what our actions are doing to others ... we just need to care, even if we’re not in that high-risk category, how can we care to conquer COVID?”
Monday’s nearly 2,000 new COVID-19 cases were confirmed out of 9,523 people tested, with a 20.7% positive rate, according to the Utah Department of Health. The rolling seven-day average for new cases is now 2,949 per day, and the average positive test rate is 24.6%.
Currently, 503 patients are hospitalized with the disease in Utah. ICUs throughout the state are 84.3% full overall, and referral ICUs that can treat the most serious patients are 87.7% full. Nearly 200 coronavirus patients are in ICUs.
The five deaths reported Monday bring the state’s toll to 723. They were: a Box Elder County man between 65 and 84; a Salt Lake County man between 45 and 64; a Salt Lake County man older than 85; a Utah County woman between 65 and 84; and a Washington County woman older than 85. All five were hospitalized when they died.
The Utah Department of Corrections reported Monday that a 50-year-old inmate who had COVID-19 died Saturday. It marks the department’s third inmate death. Before being hospitalized, the man was receiving treatment at the Wasatch Facility’s infirmary, where he was housed and was one of the first to test positive for the virus, officials said. The death is under further examination at the Utah Medical Examiner’s Office.
To date, 155,779 cases have been confirmed out of 1,254,258 people tested for the disease in Utah. At least 105,000 people are considered recovered from the disease after surviving the three-week point since their diagnoses. Hospitalizations since the pandemic began now total 6,859.