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Friday, January 10, 2014

Screening Newborns For Disease Can Leave Families In Limbo

By Nell Greenfieldboyce
NPR Health News
Originally posted December 23, 2013

For Matthew and Brianne Wojtesta, it all started about a week after the birth of their daughter Vera. Matthew was picking up his son from kindergarten when he got a phone call.

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 this disease is expanding, even though some experts say the treatment available doesn't seem to help affected children as much as was initially hoped — and testing can put some families in a kind of fearful limbo.

The entire story is here.