A year in the pandemic; or, how I learned to live with uncertainty and loathe misinformation
By: Alex Janevski
Tags: Fatherhood, Premature Babies, Misinformation, Covid 19, Pandemic Reflections

A year in the pandemic; or, how I learned to live with uncertainty and loathe misinformation Alex Janevski Apr 29·7 min read

It’s been one year since I wrote my first piece about the pandemic, and I am saddened to see that my prediction that half-measures of shutdowns and too soon re-opening have been borne out. Nearly half a million people have died in the United States alone since I wrote that essay. I never imagined it would be that bad. Or maybe I just hoped it wouldn’t. I also don’t think it needed to be, and wouldn’t have been, with strong, scientific leadership.

I was close to both of my maternal grandparents, and losing them both within a 6 month period a few years ago is a loss I’ve never quite gotten over. Although they separated before I was born, both were instrumental in my upbringing, filling in the gaps where my parents wouldn’t or couldn’t. My grandma was a very tough woman, from whom I learned to not suffer fools gladly. My grandpa was an eternally forgiving man capable of accepting the worst life threw at him with a laugh — a behavior I try to emulate. I’ve spent a lot of time in the past year actively trying to be grateful, because I know, objectively, that I am lucky in more ways that I can count — like having had such great grandparents. And yet 2020 perversely made me somewhat glad that they were not around. My grandmother on oxygen, already struggling to breathe, living out her days alone, at home, pretty much exactly where she wanted to be, would have worried me endlessly. My grandfather, a church-going man, lived in an area that was rife with the kind of misinformation that would have put him at great risk of contracting the virus.

The year in the pandemic did leave me sad that my grandparents were not around to see my partner and I bring our baby into the world. Malcolm Luka was born on July 26th, shockingly early at just over twenty-five weeks of gestation, and only 1 pound, 10 ounces. I do not recommend this. I have many lifetimes of stories I could tell about the 112 days my partner and I spent in and out of the hospital, 102 of them as a family. A month before Malcolm was born we were told there was only a 50% chance the pregnancy would be viable. This, after having struggled to become pregnant in the first place, and being told there was only a 50% chance of that happening. After my partner entered the hospital when her water broke at 23 weeks and 5 days, in the notorious “grey zone,” we were told there was only a 50% chance of labor not continuing, and the baby getting those crucial extra days in the womb to develop. Ten days later when labor started and Malcolm was born, we were told he had a 50% chance of survival. After survival started to look likely, we were told there was a 50% chance he would end up with some, as yet undetermined, lifelong congenital birth defect.

Each time I heard 50% my conscious brain remembered my academic talks invoking binomial sampling probability and urn problems, how unlikely it was that luck would keep breaking our way (0.5^n, the odds of flipping a coin and getting heads again, and again, and again, and again… 50%, 25%, 12.5%, 6.25%, etc.), while my rational brain struggled to tamp down my anxiety and remind myself that each of these were an independent trial, and held no memory of the luck we had already had. The more than three months we spent visiting the NICU on a daily basis, much of which we were unable to hold our intubated and IVed baby, is thus far the worst experience of my life. I haven’t taken stock of it. I don’t think I ever will.

Malcolm at a few days old. 5" truck for scale, a toy shared by his friend, Ira.

We were lucky in so many ways. We have good jobs, supportive friends and family, and the resources to rent an apartment in the midst of an economic collapse in a city nearly two hours from our home so we could spend as many waking minutes as possible with our newborn — whom we could hardly even touch for many weeks. All of this took place in the middle of a pandemic, which meant being screened for a fever or other sign of covid-19 every single time we entered the hospital, and again when we entered the NICU. It meant that we faced the threat of a fourteen day quarantine, minimum, if we caught the virus. Fourteen days being banned from seeing our baby, who was fighting for survival. One hundred and two days of worrying about contracting a life-threatening virus, spreading it to each other, to the nurses, to a NICU filled with babies struggling for breath.

One positive thing to be said is that unlike many respiratory ailments, infants appear to be very resistant to the harms of covid-19. The devil is in the details — it’s not like there are controlled studies on the effect on infants, the long-term implications, or even ANY data on what would happen if a two pound baby on a ventilator contracted it. However, in the situation we were in, none of this matters. It’s not worth taking any risk when you already know that your baby’s survival chances are on a teeter-totter.

Which is why I have to share the most frustrating moment of our time in the hospital. It was only a few weeks into Malcolm’s fifteen week stay in the NICU, and we had already started to pick our favorite nurses to care for Malcolm (requiring constant care, including nurses, doctors, respiratory technicians, and others meant Malcolm was cared for by MANY people). There was constant worry on our end, as his oxygen saturation dipped into dangerous levels, infections set in, his undeveloped heart limited blood flow, and more. And more. And more. So the last thing we ever wanted to question was the care he might receive at those times of day when we couldn’t be there to keep watch over him.

That is particularly hard to avoid when you have a nurse who seems incapable of keeping her face mask on (parents were required to do this while in the NICU, as were staff, obviously). Even worse is when you overhear the same nurse saying that masks are pointless, and that coronaviruses are just a cold. Both of these statements are objectively false, but they are fanciful tales told in certain circles. It’s entirely unsurprising that we overheard this same nurse, a white woman, explaining to the black janitor how “white privilege” wasn’t a thing, because she worked hard to get to her position. A position where, unlike the janitor, who politely accepted her claim (and I’m sure silently seethed as much as I was on the other side of the curtain), she apparently could dispense with any of the interpersonal skill one might think was required in her position, and any thought for what a parent who overheard her might think about her pontificating that a lethal respiratory virus was no big deal in a room full of premature babies on ventilators.

It was again my rational side that prevented me from notifying her superiors of her behavior — she was more diligent in her care for Malcolm than some of the other nurses, and facing a constant shortage of staff in the midst of the pandemic with staff getting sick and having to quarantine, the last thing I wanted was to see another traveling nurse come in and make a mistake like attempting to feed Malcolm without first checking the placement of the feeding tube, filling his lungs with milk, causing him to aspirate and turn purple in my arms. I was willing to take the experienced nurse who seemed to know the basics of caring for my infant, but felt the need to regurgitate nonsense that she read on Facebook, over a nurse that could keep her mask over nose but didn’t seem to know how to pick up a preemie. The devil you know, so to speak.

Despite the stress and uncertainty we faced, magnified by living in a world that required avoiding contact with other people, including friends and family, and constantly juggling the logistics of pandemic rules, everything did seem to break our way. Our coin kept coming up heads. Malcolm now sits at home with us, a relatively healthy 9 month old (in a 6 month old’s body). He is nearly always happy, quick to bring a smile to his face with a little dance from dad. He already loves Zoom calls, one of the only ways he’s gotten to see other faces during the lockdowns. We’re still not totally out of the woods. Mom and dad are now both vaccinated, but it could be some time before a vaccine is approved for infants, and it’s unclear what the future might hold with a disease that has been allowed to spread far and wide and evolve new variants. Malcolm, like many micropreemies, suffers from infant lung disease, so he’ll remain at higher risk for respiratory viruses (like RSV) for a long time. We won’t ever quite go back to normal, I think, even if the pandemic is one day in the rearview mirror. What parent does? But I do hope that we can soon go about our lives as if 2020 never happened, that the anxiety and fear we lived for nearly six months becomes a thing of the past, and that we look forward to watching a happy and healthy boy grow up.

Malcolm 100 days later, on his first day home. 5" truck again for scale.

p.s. There are many terrible books on parenthood, and almost none prepare you for the situation you’ll face if your baby comes 15 weeks early. For that, I wholeheartedly recommend Jennifer Gunter’s, The Preemie Primer, who openly shares the challenges she went through with her own premature children, from the perspective of a doctor who is able to share the medical science, along with her personal experience. Although the challenges she faced with her own sons, experiencing many of the threats Malcolm was lucky to avoid, may be hard for some new parents, so read it when you are ready.