Theme: Receiving the Diagnosis

A poor diagnosis in the NICU, delivered poorly: “They were trying to give us hope. But they hadn't yet delivered the news that we were in a hopeless situation.”

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A poor diagnosis in the NICU, delivered poorly: “They were trying to give us hope. But they hadn't yet delivered the news that we were in a hopeless situation.”

The mother and father of a son diagnosed with an extremely rare genetic condition reflect on how their medical team delivered the diagnosis. They explain how confusing it was to have clinicians sharing information with them about their son using coded language that they had to try and decipher.