Expand newborn screening / LJWorld.com

Archive for Thursday, March 15, 2007

By Steve Warren

March 15, 2007

About 24 to 48 hours after a child's birth, we need to test for signs of possible health trouble.

Trouble as in the potential for brain damage, mental retardation and slowed physical growth.

Trouble as in death.

Today, 29 diseases and disorders are treatable if they're detected early. Their effects can be stopped or reduced.

Kansas requires the use of four screens to identify seven potential disorders in newborns. In Missouri, right now, health-care providers screen for some two dozen disorders, in Mississippi, for more than 40.

Mississippi is near the top of the nation. Kansas, usually in the middle of national lists, is near the bottom when it comes to newborn screening.

The Kansas Department of Health and Environment is advocating for legislation that would result in screening for the 29 treatable disorders.

What does screening require? That a baby's heel be pricked, a little blood blotted up on filter paper, then tested, tested for signs of a metabolism that's maybe a hair off. Perhaps an enzyme is missing, or a hormone. Yet given enough time, the accumulating impact of these tiny malfunctions can be huge.

There may be challenges to a call for expanded testing. I understand when people raise questions about financing, but newborn screening has gotten financed elsewhere.

There's also been an issue about test sensitivity, the fact that children on the cusp of having a problem, but not over the line, sometimes test positive for a disorder and have to be retested.

There's room for error, of course, in any test.

I think of expanded newborn screening less as a medical issue than an ethical one.

Besides saving families, insurers and the society at large a huge expense by early and thorough screening, we can also spare families suffering.

We can spare them the diagnostic odyssey they make, from doctor to doctor, trying to get a fix on a mysterious something about their child that's causing problems.

For years, Kansas has required the same four screens. It's time to do more. Personally, I hope that someday we go further than screening for 29 disorders. Research shows that even if problems aren't treatable, parents want information about what's going on with their kids.

But for now, 29 screens makes sense. People talk about picking the low-hanging fruit first. When it comes to children's health, newborn screening is as low-hanging as any fruit you'll find.

- Steve Warren is director of the Institute for Life Span Studies at Kansas University and one of three authors of "Newborn Screen for Developmental Disabilities," published in 2005 in the American Journal of Public Health.