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It was their pediatrician, with some shocking news. Vera had been flagged by New York's newborn screening program as possibly having a potentially deadly disease, and would need to go see a neurologist the next day.
Like every state, New York requires that newborns get a small heel prick so that a few drops of blood can be sent to a lab for testing. The idea is to catch health problems that could cause death or disability without early intervention.
But in recent years, patient advocacy groups have been pushing states to adopt mandatory newborn screening for more and more diseases, including ones that have no easy diagnosis or treatment.
One of those is Krabbe disease, a rare and devastating neurological disorder.
In 2006, New York became the first state to screen for Krabbe, and until recently it was the only state to do so. Screening for...