Robert Guthrie developed a method to test infants for phenylketonuria (PKU) in the United States during the twentieth century. PKU is an inherited condition that causes an amino acid called phenylalanine to build to toxic levels in the blood. Untreated, PKU causes mental disabilities. Before Guthrie’s test, physicians rarely tested infants for PKU and struggled to diagnosis it. Guthrie’s test enabled newborns to be quickly and cheaply screened at birth and then treated for PKU if necessary, preventing irreversible neurological damage. After developing the test, Guthrie traveled the world to advocate for mass screening for PKU in newborns. Along with his PKU test, Guthrie developed newborn screens for maple syrup urine disease and for galactosemia. Guthrie’s test for PKU and campaign for newborn screening led to the early diagnoses of PKU in thousands of infants, preventing those infants from developing mental disabilities.

Studies during and following the height of the Coronavirus pandemic show that psychological and physical health levels decrease, due to factors such as reduced human contact and anxiety. However, there is little to no research on how quality of life levels would change over the course of the pandemic for families who have the added stress of having a child with a developmental complication. To answer this question, this study utilized longitudinal data from the Babble Boot Camp, a project under the ASU Speech Language Genetics Lab, to analyze quality of life measures in families who have children with Classic Galactosemia (CG). CG is an inborn metabolic disorder that causes an intolerance to galactose, a sugar in dairy, the effects of which can be deadly. These children often show signs of developmental delays in multiple areas within the first few years of life. Studying quality of life surveys before, during, and after the most intense phase of the pandemic, this study investigates the difference between these families and those with typical children.