Newborn Screening Program Celebrates 50 Years
Beate Weiss-Krull of Portland gave birth to her first daughter Alena in November 2003. Before they left the hospital, staff members collected a few drops of blood from Alena’s heel onto filter paper and submitted it to the state laboratory for testing.
The Northwest Regional Newborn Screening Program, run by the Oregon State Public Health Laboratory in Hillsboro, annually screens about 170,000 newborns from six Western states – Oregon, Idaho, Nevada, New Mexico, Alaska and Hawaii – for metabolic, endocrine and hemoglobin disorders, and cystic fibrosis. The purpose is to identify infants who aren’t yet showing symptoms of disease, but still need prompt treatment to prevent severe disability or death.
Within days after arriving at home, Alena’s weight plummeted and she was dry-heaving. Upon returning to the hospital, the family received shocking news from the state newborn screening program: Alena had classic galactosemia, an inherited disorder that affects the body’s ability to process the sugar galactose derived from animal sources, such as dairy cows.
But thanks to newborn screening and the quick reaction of her pediatrician, Alena not only lived, she thrived. So did her sister, Mia Rose, who was born in February 2006 also with classic galactosemia. Their parents help them manage the disease with a simple diet of foods that don’t contain milk sugars. Weiss-Krull says, “Without newborn screening, she would have been dead or severely mentally challenged. I don’t know if either of my children would have survived.”
Since 1963, the Northwest Regional Newborn Screening Program has tested more than 4.7 million infants and detected 2,961 disorders – a frequency of 1 in 1,591. Oregon was the first state to routinely screen infants for the metabolic disorder phenylketonuria, or PKU. Oregon is joining the Association of Public Health Laboratories and the Centers for Disease Control and Prevention in celebrating the golden anniversary of newborn screening through the year-long "50 Years of Saving Babies’ Lives” awareness campaign. Newborn screening prevents more than 12,000 infant deaths and cases of profound disability across the country each year.
Dr. Michael Skeels, director of the State Public Health Laboratory who has been involved with the newborn screening program for 30 years, says the program now screens for about 40 disorders. “What they all have in common is that the child rarely appears with any symptoms at birth. If you can detect disease as soon as possible and start the child on a treatment, then you can prevent the development of the disease.”
Skeels praises the committed staff of the state newborn screening program. “The newborn screening folks are on a mission,” he says. “They treat every sample they test as if it were one of their own children. They know there’s a baby at the other end of every one of those samples.”