State To Begin Testing Newborns For Krabbe Disease

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 Department 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%.  

“There are some children that have been shown that if they had an early bone marrow transplant have had normal or near normal cognitive abilities, but most children even with the transplant still have significant issues, but they have less issues and survivability is much better.”

Carlson says it's vital to catch the disease early.

"The test is good, but it’s not perfect, and to be effective, we have to do the bone marrow transplant very early," he said. "within the first couple months of life if there’s going to be a salvaging of the neurological system.”

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.