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When journalist Amanda Hess was 7 months pregnant, a routine ultrasound revealed that her baby appeared to be sticking out his tongue. Hess was charmed by the visual, but her doctors warned that it might be sign of a rare genetic condition. What followed was a spiral of MRIs, genetic testing, consultations with specialists and late-night dive into the internet for answers.
“After several weeks of tests, when I was about eight months pregnant, we learned that my son has Beckwith-Wiedemann syndrome [BWS], which is an overgrowth disorder that, among other things, can cause a child to have a very enlarged tongue,” Hess says.