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Deadly Delays, But Not In Iowa!

  • The Milwaukee Journal Sentinel published an article in November 2013 compiling states’ information about their newborn screening programs.  It was reported in 2012, at least 160,000 blood samples from newborn babies arrived late at labs across the country, according to the newspaper's analysis of screening tests from 31 states.  This was due to over half the labs being closed on weekends and holidays, utilizing delivery methods that were not overnight delivery, and not delivering samples to the lab in within three days of collection.  Some hospitals admitted to “batching” samples in order save shipping costs instead of shipping samples daily.  The methods utilized for contacting local doctors also slowed results.  The published article highlighted how delays, intended to save babies lives, can have devastating effects for babies. 

    Newborn screening can save or improve the lives of over 12,000 babies each year in the United States.  According to the article, about one in every 800 babies is born with a potentially severe or deadly condition.  Some of the conditions added to the expanding list of newborn screening disorders put the baby at risk as soon as the baby is born.  Many times, these babies appear healthy at birth but can become extremely sick within days of birth.  After being accurately diagnosed, a child may require early treatment in order to have the best lifelong results.  Timeliness of newborn screening results is critical!

    My son Brody, who was diagnosed with Biotinidase Deficiency, benefitted from the timeliness of Iowa’s newborn screening program.  Children diagnosed with Biotinidase Deficiency can begin exhibiting symptoms affecting their quality of life shortly after birth.  With early and continuous treatment, children with Biotinidase Deficiency can live completely normal and healthy lives.  The published analysis highlighted Iowa’s exceptional program and their careful attentiveness throughout the entire process.  Iowa was one of two states that met the time-sensitive guidelines created by the U.S Department of Health and Human Services for 99% of blood samples in 2012.  

    Beginning in 2006, with the leadership from program manager Stan Berberich, Iowa’s labs are now open 365 days a year.  Babies are born every day.  Although this is an obvious fact, the significance may not be fully recognized.  The birth of a baby with a time-urgent condition is equally probable for any day of the week. Iowa’s labs are open overnight, on weekends, and use a courier service.  Ten years ago, 10,000 blood samples arrived at the lab after five or more days.  Yet, only 67 samples were that late in 2012.  This courier service, which includes 12 drivers, stops at every hospital in Iowa on a daily basis.  Testing of the samples begins immediately and throughout the night upon arrival to the lab.  Our family can attest to the timely follow-up provided to families with positive screen results. 

    Thanks to the quality, effectiveness, and timeliness of Iowa’s newborn screening program, children like Brody have been identified as soon as possible.  Brody is now 2, healthy, loves the outdoors, and has a gentle, adventurous spirit.  We are grateful to all involved in making Iowa’s newborn screening process one of the best!

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