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In this episode of Neo News, journalist and New York Times critic-at-large Amanda Hess joins host Dr. Eli Cahan to revisit the story behind her viral essay, “My Son Has a Rare Syndrome, So I Turned to the Internet.” Amanda shares the disorienting experience of receiving her son’s diagnosis of Beckwith-Wiedemann syndrome during a routine third-trimester ultrasound and the digital spiral that followed.
As a new parent navigating the NICU and early medical complexities, she reflects on the paradox of modern care: how high-tech diagnostics coexist with emotional disconnection—and how often the only available companion is the search bar. The conversation explores the reality of caregiving with limited context, the emotional fallout of confronting diagnosis alone, and the unpredictable role of the internet and social media in shaping parental perception.
Drawing from her upcoming book Second Life: Having a Child in the Digital Age, Amanda brings a clear-eyed perspective on the information gaps, algorithmic noise, and the human need for clarity when the stakes are impossibly high.
Listen in for a raw and thoughtful look at what happens between the scan, the screen, and the real child in your arms.
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As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.
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