After reporting by the Chicago Tribune uncovered public health officials were failing to test babies for a devastating neurological disease, the Illinois Department of Public Health says the tests will begin today.
Krabbe disease is an inherited disorder that causes neurological deterioration; basically, the body shuts down and children don’t typically live past 10 years of age if it’s not caught in time.
Dr. Doug Carlson, chief of pediatrics at SIU School of Medicine, says there is effective screening and treatment but it’s not always 100%.
He says some children had normal or near-normal cognitive abilities after an early bone marrow transplant, and there is better survivability. But Carlson admits even with a transplant, most children still have significant issues.
The state approved a law requiring newborns be tested for this disease among dozens of others a decade ago. The state’s public health agency did not respond for comment when asked why it took so long.