Coronavirus and immunocompromised kids: 'Where does this leave children like mine?'
One day this past January, I got up, got dressed, went to the gym, and by the time I went to bed that night, my 8-year-old son Bennett had been sedated in our local children’s hospital after having back-to-back seizures for hours on end. Bennett has epilepsy with cardiac involvement and has at times seized so severely that it’s prompted a team of doctors to medically sedate him in an effort to protect his brain neurons from death. It’s an image that I will never forget, but would give anything to be rid of. And it leaves me feeling out of control, every second of every day.
It’s the same feeling that I now recognize in people around the world, as the threat of the coronavirus (and its resultant COVID-19) spreads: an out-of-control, fear-driven feeling, that is causing people to stock up on everything from hand sanitizer to a two-year supply of toilet paper. When faced with the uncertainty of our own surroundings, we grab onto anything that we can in an effort to feel in control — which, for many people, means buying everything they fear they might ever possibly need.
Trying desperately to protect my family is nothing new to me. When we go out, I slather Bennett in hand sanitizer. I scrub our house, fill him to the brim with vitamins, stay away from overly crowded places and enforce military-style rules on hand-washing. If you’re sick, I don’t want to see you near my kid for at least two weeks. Neurotic? Of course. But Bennett’s body doesn’t work like everyone else’s, so these are my options.
But like many people, this is my first pandemic. And after going to three different stores, and my husband rushing home from work early to check a few others, we still weren’t able to purchase anything that we normally buy to protect our son. The sheer chaos engulfing our stores is a scene right out of a movie — as if a post-apocalyptic crowd is shopping on Black Friday, mobbing, and devouring everything in sight.
I don’t know what to do, just as no one really knows what to do right now. And I’m upset because media reports are misleading us all about who, exactly, is most affected by this outbreak, which is putting kids like mine at risk.
Healthline reports that there is only one at-risk population, which is people over the age of 65. The CDC’s first recommendation to protect one’s self is to stock up on supplies. But The New York Times is reporting that medical professionals are running critically low on necessary supplies to treat patients, stemming, at least in part, from consumer panic buying. And by now, everyone knows that things like hand sanitizer and face masks are about as easy to find as Bigfoot. Which is really scary, because it’s left at-risk people without the necessary supplies to protect themselves from any number of other common viruses — a terrifying thought that hit me when I read The Washington Post’s report on how Italy’s health system is so overwhelmed, it simply cannot provide care to everyone.
So where does this leave children like mine? And everyone else who is immunocompromised or has an underlying health condition? There is more than one way to be at-risk for COVID-19. It’s something I’m learning all too well as I watch the foundation that keeps my son alive crumble beneath his feet.
My good friend Katy Payne lives with very similar fears. Her adorable 3-year-old daughter, Julia, contracted Acute Flaccid Myelitis in 2018, and, almost overnight, the condition paralyzed her. Although she has improved since then, she still relies on a ventilator to help her breathe.
“I’m terrified of coronavirus,” Katy tells me. “This is something that will infect everyone and most people won’t know they even have it while spreading it and potentially killing those with compromised immune systems. It’s hard to relax, and I worry every time we are out that the little kid who didn’t sneeze into their elbow could be the reason Julia ends up back in the hospital. Now everyone else is feeling the same fear we feel about germs on a daily basis, and they are taking all the supplies from people like us who truly need it.”
Like the mom I noticed on Facebook, begging for Lysol wipes so that she could get her child, who is fighting cancer, safely to her chemotherapy treatment.
America is a nation formed in unity, and now here we are, fighting each other at the grocery store for the last roll of toilet paper. There’s a secondary population at risk here that people aren’t thinking about when they clear an entire shelf into their carts. And while I want to be angry, I know that we are all just scared.
So the only thing I’m asking, as a mom who has been terrified long before the coronavirus came around, is this: Please, take only what you need, share what you can and let’s all try to get through this together.
For the latest news on the evolving coronavirus outbreak, follow along here. According to experts, people over 60 and those who are immunocompromised continue to be the most at risk. If you have questions, please reference the CDC and WHO’s resource guides.
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