TOPEKA, Kan. (WIBW) - Children born with some conditions can lead normal, healthy lives if the conditions are diagnosed and addressed early.
That's the idea behind the Kansas Newborn Screening Program. Every baby born in Kansas gets a little poke on the heel. Blood is collected on a paper that is then sent to a state lab, where it's checked for 29 inborn or genetic disorders.
A positive result starts a chain reaction. Cotton-O'Neil pediatric hematologist Dr. Jakica Tancabelic, who serves on the advisory council for the Kansas Newborn Screening Program, says follow-up tests are done to confirm a diagnosis, specialists are contacted and interventions are started immediately.
Of the 40,000 babies born in Kansas last year, 2800 were identified as possibly having one of the conditions. Tancabelic says, without the testing, conditions like cystic fibrosis and sickle cell anemia might not be identified until much later. By the time they are, she says, it could mean the child would become physically dependent, mentally impaired or, in some cases, die an early death. With the early intervention, she says, in many cases, the children grow up to lead normal, healthy lives.
Conditions included in the screening are reviewed each year. To be included, the disease must be treatable, doctors must understand its history, testing for it must be done in an acceptable way; and it must be known who will be treated. In many cases, Tancabelic says, parents have been the biggest advocates for getting conditions included.
In Kansas, for example, testing expanded from four conditions to 29 conditions just four years ago. NFL great Jim Kelly visited the state to advocate for the expansion. Kelly's son, Hunter, died from Crabbe Lucko Dystrophy at age eight and a half.
The screening costs about $80 per child. Right now, Kansas is the only state that does the testing at no charge.
You're invited to tour Stormont-Vail's Birthplace and NICU. They're hosting their quarterly "Welcome Baby Jubilee" from 2 to 4 pm Sunday, February 19th. Those interesting may RSVP at www.stormontvail.org.