Well-run organizations keep track of their work. If a project runs late by weeks or months, managers ask questions, problem-solve and demand results. Suppose that assignment involves a new state law with potentially life-or-death consequences for babies. How long before officials get impatient with delays and sound the alarm? Six days? Six weeks? Six long months?
At the Illinois Department of Public Health, the confounding answer is seven years. The agency is seven years late creating a mandated program to test newborns for Krabbe disease (pronounced crab-AY), a rare genetic condition that is fatal if not detected and treated early in life. Krabbe is a diabolical affliction that doesn’t present itself at birth. The baby, apparently healthy, starts to deteriorate months later, by which time treatment no longer works. That’s why testing newborns is crucial.