There is an entire digital economy dedicated to the spread of false but convincing information. The stories go deeper than the graphics. Social networks allow its rapid amplification and dissemination, while there are websites that keep stories and anecdotes on specific pages. In the weeks after my son died, some people politely monitored my social media accounts to reduce my exposure to hate and bullying. They reported and documented those comments that deserved it, while others tried to slow down the spread of the lie and reported accounts for harassment. One website owner, who we contacted with a request to remove a blog post, responded that he would never abide by it. He told us that most laymen “don’t understand the work that goes into creating content.” People were making money off that image, through clicks and shares, while we had limited resources.
Staying away from social media was the right decision at the time, but it also meant letting go of messages of support, affection, sympathy, and empathy, particularly from other parents who had lost an infant.
Months after that ordeal, I reviewed more than 400 screenshots. While many of the comments called me a “murderer” or “the dumbest mom ever,” others had questions about the details of our loss, or claimed that this story validated their skepticism about the vaccine.
This blaming to explain a loss seems to have become more common in the last two years. In a reportage For The Atlantic published in April, Ed Yong wrote about the many Americans who are grieving the loved ones they have lost to COVID-19. He noted one particular constant: Often when bereaved people talked to others about their loss, they were asked questions like: Were they vaccinated? Did they have any previous illness?
In times so full of unknowns, people seek explanations for why terrible things happen, and reassure themselves that other people’s tragedy could not happen to them. However, to do so with such callous disregard for the truth, as has been done to my family, is an unacceptable new norm, reinforced when people demand and share information without applying critical thinking. If someone already had doubts about the safety of a medical intervention, such as a vaccine, hearing about a woman who was vaccinated during her pregnancy and then lost her baby can create a vicious cycle of unsubstantiated confirmation bias.
I need to believe that the world is not full of people who are willing to cause more pain to parents who have lost their baby, despite the signs I have seen to the contrary. Perhaps people wanted to console themselves by directing the blame at me, as if there weren’t unexpected losses every day. Perhaps those people were unsettled by the uncertainty surrounding changes in recommendations during the pandemic, and so looked for an easy villain, like vaccines or big pharmaceutical companies. Perhaps they thought that they were serving as a mouthpiece for a story that had not been told and that people needed to hear, regardless of whether the affected person had something to say in it, or whether it was true.
The Internet and social networks are spaces where many of us have found a community and connections, both personally and professionally. Since I’m in the business of thinking deeply about how people consume information, my advice to anyone who wants to stop the spread of misinformation is to pause and assess before paying attention and sharing it. Ask yourself: who has made this content and why? Anecdotes contradicting hard data, especially on such fickle topics as vaccine safety, are often used to promote misinformation. It is even more important to read these stories with a critical eye.
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