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  • dmoberger

I tried to ignore a childhood trauma, but COVID-19 shoved it back in my face

“Mom, I can’t get out of bed,” I yelled across the house.

When I was 4.5 years old, I woke up and tried to go to the bathroom, but my joints radiated an ache so intense I could not stand. I only remember snippets of the morning, but I possess the general feelings one maintains of a formative event. The pain scared me. My inability to walk made me feel helpless.

My parents took me to my primary care doctor, who attempted to take a blood sample. “She put a tourniquet around your upper arm, and it turned bright red like you were bleeding under your skin,” my mother recalls. I can tell from my side of the Zoom call that this detail, which I’m thankful I don’t remember, still makes her squeamish.

 

I was diagnosed with Kawasaki Disease 25 years ago, and I have since tried to keep the ordeal out of my mind. In early May, I started seeing headlines that made ignoring my experience impossible. From CNN: “Doctors in Italy make a link between COVID-19 and rare ‘Kawasaki-like’ inflammatory disease in children.” The fright returned, but this time I was frightened for others, frightened that this Kawasaki relation could add another alarming layer to the pandemic.

The headlines prompted me to get in touch with Dr. Jane Newburger, one of the Boston Children’s Hospital cardiologists who diagnosed my Kawasaki and one of the world’s foremost experts on the disease. After scolding me for not checking in with a cardiologist in several years (I deserved it), she told me the relation between Kawasaki and COVID-19 could be explained in two ways.

The “Kawasaki-like” disease referenced in the CNN headline, and in this Boston Magazine article from May 12, is its own beast called Pediatric Multi-System Inflammatory Syndrome. PMIS is technically unrelated to Kawasaki but has similar symptoms.

The second relation hit home. Newburger told me traditional Kawasaki has been found in greater frequency in COVID-19 patients. Kawasaki is rare. There are 19 cases per 100,000 Americans each year, according to the Kawasaki Disease Foundation. It doesn’t often make headlines, so I’m rarely reminded of its existence, which explains why I was able to easily cast aside those memories. Newburger explained that Kawasaki sufferers have a genetic predisposition, but the disease is also set off by some kind of trigger, and recent findings show that COVID-19 might be one of those mysterious triggers.

 

After the tourniquet scare, my primary care doctor made several calls to other doctors and ultimately suggested my parents take me to Children’s. I had a nasty rash, which made the doctors fear I had a contagious disease. My parents recall being told I may have to be quarantined upon arrival at the hospital—a much more ominous threat of quarantine, they noted, than the preventative one most Americans are dealing with right now. We got there, and finally, after several doctors examined me, they landed on the Kawasaki diagnosis.

I barely moved from my hospital bed for several days. At all hours each night, waves of med students woke me up to prod me with ice-cold stethoscopes so they could listen to my rare heart murmur—a distinct whooshing sound unrelated to my Kawasaki. “Can’t you come back in the morning?” I pleaded. They were working overnight rotations, so they wouldn’t be around at more reasonable hours. Kawasaki was less understood then, so although I was far from the first case in the world, I felt I was being studied like a lab rat.

I wasn’t allowed to go home until I could walk from my hospital room to the playroom at the end of the wing of the hospital. On day three, in spite of a significant limp, I toughed out the saunter down the hall. I think I was just sick of being woken up and wanted to go home.

Kawasaki causes inflammation in blood vessels and can, in rare cases, cause serious, lasting damage to the heart. It also affects the joints, which is why I couldn’t get out of bed. Perhaps the most frightening fact about Kawasaki is that the majority of cases are in children under 5. I can attest that even though sufferers typically recover without serious lasting issues, fighting Kawasaki as a child is terrifying, and it may be even more terrifying to parents. I almost felt bed that I made my parents relive those moments, but I needed help remembering.

That limp lasted for months, but Kawasaki left me otherwise unscathed—although I do have the joints of a man far beyond my years, and I suspect that’s at least in part due to the Kawasaki. The inflammation in my heart, thankfully, did not cause permanent damage. And the doctors did find a minor defect in my heart unrelated to the Kawasaki, the faulty valve causing the whooshing that enticed the med students. So, in a way, my bout with Kawasaki helped me be better informed about my own health.

Every few months after I was released, I revisited Children’s for a checkup. Then, I started going once a year. Then, once every two years. The Children’s staff made all those appointments as painless as possible, but I still hated that I had to miss school to be jabbed by various instruments during an array of tests for several hours. Now, I hardly pay mind to my minor lingering heart issues and almost no mind to the Kawasaki, and that’s because I was lucky.

 

My Kawasaki was more scary than destructive. But some patients are not as fortunate as I was 25 years ago. As if the pandemic weren’t bad enough, now more kids have to worry about disturbing rashes and scalding fevers and their joints hurting so much they can’t bear to take a step. I hate thinking about more kids having to go through what I did—or worse, if they have complications.

I now live in Chicago. On a sunny afternoon during the first weekend restaurants with open-air seating were allowed to welcome back guests in limited capacity, I walked along a bustling stretch of eateries and saw groups of eight people crowded into tables. Regulations allowed no groups larger than four. I saw tables crammed much closer than the recommended six feet apart. The first weekend. I thought about my Kawasaki, just as I had when I saw the CNN headline. My hope is that with businesses across the country reopening, COVID-19 safety will be taken seriously, but that wasn’t a good start. I would really like to be able to shift my Kawasaki memories back to a cobwebbed corner of my mind.

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