Think big. Come together. Be bold. And don't let anyone fall through the cracks.
Those are the lessons I've learned from the story about the start of the Northwest Regional Newborn Screening Program. If you haven't yet seen The Oregonian's coverage, I encourage you to spend some time with the words, the photos and the video. They tell the story of how Oregon Public Health pioneered automatic screening of newborns in 1963. Over the past five decades the program has screened nearly 5 million infants in six states (Oregon, Idaho, Nevada, New Mexico, Alaska and Hawaii) for metabolic disorders.
Today it seems obvious that we would test babies for conditions that can be treated early to prevent severe disability or death. But at the time, it was new thinking. I imagine what an effort it must have required to get every hospital to participate. They had to prove the merit, push for funding, get support from stakeholders, and solve glitches in the system.
Sisters Alena, left, and Mia Rose.
But the payoff has been huge. Newborn screening prevents more than 12,000 deaths and profound disabilities across the country each year. Children like Alena, who was born in 2003. Before she and her mother Beate Weiss-Krull 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 lab found she had classic galactosemia, an inherited disorder, which meant her little body couldn't process sugars from animal sources – such as dairy cows. Three years later her sister Mia Rose was born with the same condition. The disease can cause severe disability or even death but can be avoided by simple diet management.
Thanks to the newborn screening program, these children are thriving today. Today our public health lab screens for about 40 disorders, many of which don't have symptoms, but if caught and treated early can be prevented or controlled.
Sometimes when we talk about health reform in Oregon today we forget that our state – and many of the people who work at OHA today – have long been pioneers in pushing for better health, better care and lower costs. Congratulations to everyone at the Newborn Screening Program and our Public Health Division for 50 years of saving lives.