Beating COVID-19 and MISC-9: Matthew’s story
When 20-year-old Matthew came down with a mild case of COVID-19 before the holidays, he thought it had run its course. He didn’t expect to end up with MIS-C and in the hospital – much less, the one where his mom had worked for 15 years.
Matthew’s mom, Tiffani, was a clinical dietitian at CHOC at Mission Hospital for most of that tenure before recently transitioning into a program manager role with The Sharon Disney Lund Medical Intelligence and Innovation Institute (MI3). Having spent many years working at patients’ bedside across many units at CHOC at Mission, Tiffani was already very familiar with CHOC’s practices, physicians and the environment of care, but when her son became critically ill, her role was solely that of a mom.
“When you are the parent of a sick child — whether he is 2 years old or 20 years old — you realize how truly dependent you are on the care team and must trust them to provide the solutions you can’t,” she says.
Positive for COVID-19
In December, Matthew tested positive for COVID-19. He had mild symptoms and quarantined for two weeks, spending Christmas apart from his family. Matthew got a negative COVID test in early January, and later tested positive for antibodies. He thought his illness was behind him and was making plans to donate convalescent plasma to help others fighting COVID.
The day after his antibody test, Matthew came down with a high fever. When that was followed by the quick onset and rapid progression of nausea and gastrointestinal symptoms, he headed for a local urgent care, which resulted in negative rapid flu and COVID tests.
A few days later he felt worse, so Tiffani took him to a local emergency department where he received fluids and a work-up. He was discharged, but Tiffani’s intuition and clinical background made her suspicious something else was going on. Dr. Antonio Arrieta, CHOC’s medical director of infectious disease, and Dr. Jacqueline Winkelmann, a pediatric hospitalist, were consulted.
They were concerned that Matthew’s lab work and symptoms – which included inflammation – might be indicative of Multisystem Inflammatory Syndrome in Children, or MIS-C. At their instruction, Tiffani brought Matthew immediately to the Julia and George Argyros Emergency Department at CHOC Hospital.
“From the minute we arrived in the emergency department at CHOC, things were completely different. I was allowed to stay with Matthew. The limited visitor policy in effect due to COVID still allows for one parent to be at the child’s bedside in most cases,” Tiffani says. “At the previous emergency department we visited, which was an adult facility, I had to drop him off at the curb and hope for the best, and that he would be able to advocate for himself despite feeling so sick.”
By this point, it had been nearly a month since Matthew’s original COVID diagnosis. Once at CHOC, Matthew was admitted and quickly diagnosed with MIS-C.
“The original emergency department we went to didn’t suspect MIS-C at all because of Matthew’s age,” Tiffani says. “He is 20, and typically MIS-C affects younger kids, but CHOC was on high alert because of the increasing cases in the community. They saw beyond the typical case presentation and evaluated his labs and clinical status and found the rare case immediately. I am so grateful we were able to receive Matthew’s care at CHOC.”
Finding answers and a treatment plan at CHOC
MIS-C can affect young adults up to age 21. It causes inflammation in blood vessels throughout the body due to a storm of reactions by the immune system. MIS-C is a relatively new syndrome that generally appears in people who have recovered from COVID-19.
A care team comprised of more than a dozen doctors from seven specialties, plus dozens of nurses, cared for Matthew in what would end up being a weeklong stay at CHOC. Those specialties included infectious disease, rheumatology, hematology, intensivists, hospitalists and cardiology. His pediatrician, Dr. Eric Ball, part of CHOC’s Primary Care Network, was updated and consulted as well.
Pharmacists at CHOC ensured that Matthew received the IVIG that he needed. High dose IVIG, or intravenous immunoglobulin, helps the body modulate inflammation . Matthew also received anticoagulants to reduce the risk of blood clot formation.
“We felt very calm and secure about the plan. Every specialty that was consulted was an active participant in Matthew’s plan of care,” Tiffani recalls. “The first night was really hard for us because Matthew’s blood pressure wasn’t stable, but we knew the care team was in close contact with the pediatric intensive care unit and would transfer Matthew there if he needed a higher level of care.”
Since MIS-C can cause inflammation in the heart and with his very low blood pressures, Matthew was ultimately transferred to CHOC’s cardiovascular intensive care unit. He began receiving high-dose IV steroids and monoclonal antibodies under the care of Dr. Andrew Shulman, a CHOC rheumatologist, in order to further reduce inflammation.
Part of the care team
The early days of Matthew’s stay at CHOC are a blur to him, but he does remember doctors involving him in his care plan when he felt well enough for those conversations.
“I remember Dr. Arrieta telling me about the medicine and treatment I would receive. He said they have other tools in their toolbox, but he hoped they didn’t have to use them,” Matthew says. “I’m older than some of their typical patients, and I appreciated that they respected me as an adult. All my doctors had a great bedside manner. Every single doctor made sure I knew what was going on, and that was important to me.”
Despite her history as a longtime CHOC employee, Tiffani knew the high level of care her son received wasn’t simply because she was part of the CHOC family.
“Everyone at CHOC receives this level of care. We didn’t get special treatment because I work here,” Tiffani says. “In clinical settings we cannot always guarantee results, but the team strives to get the best outcome, using their collective skills, and everyone goes above and beyond.”
Tiffani did feel, however, that she had a big team rooting for her and Matthew behind the scenes.
“My colleagues from 15 years at CHOC checked in on us all the time, both virtually and physically on the unit,” Tiffani recalls. “Their support meant the world to me.”
Turning a corner
Matthew started to turn the corner almost as quickly as he got sick.
“It was miraculous,” Tiffani recalls.
Once Matthew started to feel better and more lucid, one of the first things he told his mom was how much he appreciated that everyone at CHOC cared so much about him getting better.
“Even though he had been so sick, he remembered that the person who cleaned his room knew his name, and the food service worker delivering his meals said she hoped he enjoyed his food and that it would make him stronger,” Tiffani recalls.
Matthew started connecting with his clinicians as well. As an electrical engineering student, Matthew was interested in the inner workings of the electrical circuits in his EKG – or electrocardiogram, which records the electrical signals from the heart to check for various heart conditions. The technician who performed Matthew’s EKGs would explain everything she was doing and how the machine worked. They also discussed how to improve the technology and what future devices might look like.
Although Matthew is still committed to becoming an electrical engineer someday, he took a special interest in healthcare after his experience as a patient. Even though he doesn’t want to become a clinician, he does see how he can contribute to advancing pediatric medicine with his coding and engineering skills. He has applied for CHOC’s MI3 Summer Internship Program, and hopes to work with Dr. Anthony Chang, CHOC’s chief intelligence and innovation officer, on data science and innovation projects.
A special gift from his care team
As Matthew continued to get better, and closer to going home from the hospital, his care team wanted to send him home with something to remember his journey and be a symbol of their continued support.
It’s a tradition for heart patients at CHOC to receive a red heart-shaped CHOC Heart Institute pillow, signed by all their caregivers, when they finally go home.
“This gift is not only endearing to the patient, but symbolic to the parent,” Tiffani says, “These caregivers are tattooed on our hearts for their heroic efforts to save our kids.”
While Matthew’s care team closely monitored his status and lab reports as indicators of when he would be able to go home, his mom was noticing signs he was feeling better, too.
“I was encouraged when I saw the whites of his eyes again, as they had been pink before when he was really sick,” Tiffani says. “And when I took a photo of him and could see his cheekbones that was significant because it meant the medicine was removing the puffiness and inflammation from his body.”
A journey for both patient and Mom
While this health journey was Matthew’s, it affected his mom as well.
“As a CHOC employee, I’ve long admired the talented doctors, nurses and other clinicians for the excellent care they provide. I am humbled to call them my colleagues,” Tiffani says. “As a parent, I am so thankful we have such a wonderful children’s hospital to care for kids in our community – whether they be 20 days, 20 months or in our case, 20 years old.”
A week after Matthew was admitted to the hospital, he was well enough to go home. Since MIS-C is a new condition, little is known about its potential long-term effects. Matthew will remain in the care of CHOC cardiology, infectious disease and rheumatology, plus undergo regular lab work to monitor his health.
Matthew also decided to join a research study led by Dr. Arrieta, which is looking at MISC-C and its long-term effects.
“I kind of look at it as I just overcame this new disease and joining the research study isn’t a lot of trouble for me. So, if I can help the doctors help other people, then of course I’ll do it,” Matthew says.
These days, Matthew is feeling a lot better. He is improving every day and working to get his strength back but is avoiding exercise at the advice of his cardiologists.
Tiffani is back at work, with a renewed sense of appreciation for CHOC.
“I love working at CHOC, but because it is a clinical setting, I don’t get to take my kids to work with me and show them what I do,” she says. “I have often told them about how special the team is. They have seen me go back to work late at night to help a family or answer a doctor’s call on the weekend. So, when Matthew got sick, I needed my work family to show up for me, and they did. Now the whole family understands why those of us that work at CHOC, do what we do —because every family deserves this type of care. We didn’t receive special care because I work at CHOC, we received special care because of CHOC.”