"Losing a child seems unfathomable until you find yourself in that awful statistical minority." Photo / Krists Luhaers, Unsplash
OPINION:
I was one of many women who had a pandemic baby. Few people saw me pregnant, and even fewer met my second-born son, or ever will. In September 2021, just shy of 3 months of age, my son died. He was one of the most bright-eyed, happiest babies I've met and spent every day of his short life loved and adored.
The day it happened, I shared news of his loss in a short Twitter post. The impulse to share was a protective one. As someone active on social media, I wanted to avoid the inevitable question from friends and acquaintances: How's your baby?
Within a day, a stranger had gone through my old tweets and found confirmation that I had been vaccinated against Covid-19 during my pregnancy. That person created an image of my tweets side-by-side: one from July where I shared my relief at being vaccinated while pregnant and another from September with the story of my loss. A stranger had written "safe … and effective" alongside the screenshots, implying that my being vaccinated in pregnancy had caused my son's death. The implication captured in this image, which lives on in various corners of the internet, is a lie: the autopsy showed no connection between our son's death and any vaccinations.
Losing a child is one of parents' greatest fears; it seems unfathomable until you find yourself in that awful statistical minority. Yet the immediate response from many people to the false framing of our story was often not comfort but questions over what I did to cause such a terrible tragedy.
I did not expect the moment of my deepest grief and pain to be weaponised against pregnant women and vaccines that could protect them from the worst consequences of Covid-19. The juxtaposition of the two images felt like a violation of the space my husband and I needed to grieve. Mixed into the emails with condolences were subject lines like, "Did you know you're on Reddit?" The misappropriation of our loss made me angry. The realisation that people may still see bits of my story and have it influence their health choices hurt, both as a mother and as a public health professional. The human toll of this misinformation continues.
I've dedicated my career to creating responsible visualisations of public health data. I've written and spoken about how critical it is to make Covid-19 data clear and understandable, especially given how easy it is to be influenced by personal experience or online anecdotes. That's why seeing our loss misrepresented so boldly, and spread so widely, to further someone else's agenda has been so heartbreaking.
I felt frustrated that there seemed to be little I could do to stop the spread of the lies. I also felt deep sadness for pregnant women who may have seen the misleading account of our son's death and experienced fear and hesitation around vaccination at a time when they were more likely to get sick from Covid.
By the fall of last year, population data from V-safe, an after-vaccination health checker from the Centers for Disease Control and Prevention, and other studies overwhelmingly showed the benefits of being vaccinated during pregnancy. More recent data has indicated that having Covid-19 during pregnancy increases the risk of delivering a preterm or stillborn infant; further studies have shown that being vaccinated does not increase the risk of negative outcomes for the mother or the baby. Despite the fact that vaccination is safe for pregnant women, they were undervaccinated earlier in the pandemic compared with the general population.
There is an entire digital economy dedicated to the spread of compelling false information. Stories seem stickier than charts. Social media allows rapid amplification and shares, while websites preserve stories and anecdotes in curated pages. In the weeks after our son died, a colleague and others kindly monitored my social media accounts to limit my exposure to hate and harassment. They reported and documented comments when merited, while others worked to slow the lie's spread and report accounts for bullying. One site owner we contacted with a request to remove a blog post replied that he would never comply. He told us that most laymen "do not understand the work that goes into content creation". People were making money from that image, through clicks and shares, while we had limited recourse.
Stepping away from social media was the right choice at the time, but it also meant I missed directly experiencing the notes of support, love, condolences and empathy, particularly from other infant-loss parents.
Months after the ordeal, I read through more than 400 screenshots. While a large share of the comments called me a "murderer" or "dumbest mother ever", many others contained questions about the details of our loss or affirmed that this story validated their vaccine skepticism.
This casting of blame to explain loss appears to have become more common over the past two years. In an April story for The Atlantic, Ed Yong wrote about the many Americans grieving loved ones lost to Covid. He observed one particular constant: often when grievers would tell others about their loss, they were asked questions like, Were they vaccinated? Did they have a pre-existing condition?
In a time filled with unknowns, people seek explanations for why terrible things happen and also to assure themselves that one person's tragedy couldn't happen to them. But to do so with cruel disregard for the truth, as was done to my family, is an unacceptable new norm that's reinforced when people demand and share information without thinking about it critically. If someone already has doubt about the safety of a medical intervention, like a vaccine, hearing about a woman vaccinated in pregnancy whose baby later dies can create a vicious cycle of unfounded confirmation bias.
I need to believe that the world isn't full of people eager to create more pain for a bereaved parent, despite the evidence I've seen to the contrary. Perhaps people were looking to comfort themselves by directing fault at me, as though unexpected loss doesn't happen every day. Perhaps they feel unsettled by the uncertainty surrounding changing pandemic recommendations so they want to cast an easy villain, like the vaccines or Big Pharma. Perhaps they felt that they were amplifying an untold story that people needed to hear, without considering whether the subject had any say in the story being told or whether it was true.
The internet and social media are spaces where many of us have found community and connection, both personally and professionally. As someone who thinks deeply about how people consume information, my advice to those who want to stop the spread of misinformation is to pause and assess before they engage and share. Ask: Who made this content and why? Anecdotes that fly in the face of hard data, particularly on volatile topics like vaccine safety, are often used to promote misinformation. It is even more important to read such stories with a critical lens.
In the context of global events, being a mindful reader and retweeter can slow the spread of that misinformation. Doing so might declutter our social feeds to make space for the truth and also save a bereaved family additional pain and suffering.
Remember, there are real people at stake.
• Amanda Makulec is a health data visualisation designer, speaker and instructor and the executive director of the Data Visualization Society.
This article originally appeared in The New York Times.
Written by: Amanda Makulec
© 2022 THE NEW YORK TIMES
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