Parents push lawmakers to add more disorders to Oregon's newborn blood screening test
One of the first things a newborn experiences is a nurse pricking their heel to gather blood. A few drops are absorbed onto a special piece of paper which is then sent to the state public health lab. There, they test for everything from sickle cell anemia to cystic fibrosis.
But Oregon checks for fewer diseases in newborns than recommended by the federal government.
Now parents with children dying from genetic disorders are pushing legislators to add more disorders to Oregon’s newborn blood screening test. The idea is that when disorders are caught quickly, they can be treated to prevent developmental problems and even death.
Maternity nurse Nikki Monaco knows that all too well. Her son Emmett was born with the rare genetic disorder Krabbe disease. It gradually damages the nervous system.
But Oregon doesn’t screen for it at birth. So Emmett was fine as a newborn, but at 9 months he started having problems.
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