Journalist Amanda Hess was seven months pregnant when an ultrasound revealed that her baby appeared to be sticking out his tongue. While Hess initially found the image charming, doctors warned it could be a sign of a rare genetic condition. This discovery led to a series of MRIs, genetic tests, consultations with specialists, and late-night internet searches for answers.
At eight months pregnant, Hess learned that her son had Beckwith-Wiedemann syndrome (BWS), a growth disorder that can cause an enlarged tongue, increased abdominal organs, and a higher risk of certain childhood cancers. This condition occurs in approximately one in 11,000 births.
Hess felt frustrated that the pregnancy app she used focused solely on healthy pregnancies, providing no guidance for conditions like BWS. Turning to the internet, she encountered confusing information and, at times, insensitive comments on social media and online forums. Some even suggested that BWS was caused by stressed mothers.
As her due date approached, Hess’s fears grew, fueled by her research. But when her son was born via C-section, those fears vanished. Holding her child, she realized that technology can often dehumanize health experiences, turning them into abstract narratives.
In her new book, Second Life: Having a Child in the Digital Age, Hess explores how technology affects all aspects of parenting, from online identities to the pressure of sharing life events in real-time. She reflects on how technology not only provides information but also creates expectations and narratives that shape parents’ perceptions of their roles.
