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Latest newborn screening news

Alert:

The Newborn Screening Program of the Minnesota Department of Health would like to alert you to a significant change in storage and use of residual dried blood spots and test results. The Minnesota Supreme Court recently ruled on newborn screening storage and use of residual blood spots and test result practices in Minnesota as a result of the Bearder, et al., v. State of Minnesota lawsuit. This decision requires several changes to the Newborn Screening Program.

Beginning on January 30, 2012, the Newborn Screening Program began routinely destroying the residual blood spots from specimens received on or after November 16, 2011. The Program will retain the specimens for 71 days after the receipt of the specimen. Within one week after 71 days, the specimens will be destroyed. Through analysis of the program, MDH determined that 71 days is the maximum amount of time needed to obtain a confirmed positive diagnosis for heritable or congenital disorders. Data from the testing and results for the infant will be retained for 24 months per Federal CLIA guidelines and then will be destroyed. Please note that data and specimens from babies born between July 1997 and November 15, 2011 are currently under a litigation hold and cannot be destroyed at this time unless requested by the parents.

For Health Care Providers:
Please continue to distribute the ‘One simple test can make a difference for your child’ brochure dated 12/2011. While this brochure does not describe the details as listed above, we intend to provide an updated version with all of the programmatic changes in the spring after further legal and legislative clarification. In the meantime, we encourage providers and expectant or new parents to contact us with any questions or concerns.

•	Austin's Story Austin is a Vikings fan and a fan of Newborn Hearing Screening. (published November 1, 2011) Austin's Story
•	Change in result notifications for NICU babies Neonatologists statewide were alerted to a change in reporting by the Newborn Screening Program. This shift applies to infants who are so sick or premature that they receive their nutrition through an IV. Total Parenteral Nutrition (tpn) supplies amino acids and other important nutrients to the NICU patients. Previous recommendations required additional studies to clarify whether the screening result was a dietary artifact or present because of tpn. Please see the letter sent to Neonatologists for more information. TPN Letter to Neonatologists (PDF: 18KB/1 page)
•	Ryan's Story Ryan is missing his front tooth, but nothing else in spite of his diagnosis with a rare metabolic disorder. Ryan’s mother shares her family’s story of the difference that early identification made to Ryan and their family. (published April 26, 2011) Ryan's Story
•	Althea's Story Newborn screening identified Althea’s galactosemia before she got sick. Her early diagnosis gave this darling baby and her family a lot to cheer for and a team of healthcare professionals to keep her in the game. (published February 4, 2011) Althea's Story
•	School Lunches for Everyone The Minnesota Department of Health now has a tool for professionals working with children found by newborn screening who require a special diet. The document explains that students with medical disorders are entitled to school meals that meet their special dietary requirements. Information on the document allows families to learn how to work with their medical team, food service staff, and school to allow kids to join their friends at lunch. The document has been shared with specialists in Minnesota and is available from the Newborn Screening Program. School Lunches for Everyone... (PDF: 266KB/1 page)
•	Brandon and Taylor's Story Brandon died from a simple cold because he was born with the genetic disorder SCID (Severe Combined Immune Deficiency). His brother, Taylor, was diagnosed with SCID and treated early because doctors were aware he was at risk. The brothers’ fates were different because of early identification and diagnosis. Brandon and Taylor’s story has led their mother to lobby for inclusion of SCID in newborn screening programs. Learn more about this family in our Screening Spotlight. (published December 3, 2010) Screening Spotlight
•	How newborn screening can change a child’s life Read a story about how newborn screening in Florida saved a child’s life. The Miami Herald / Baby's first test
•	Text4baby sends free text messages to pregnant women and new moms Text4baby is a free national information service designed to promote maternal and child health. An educational program of the National Healthy Mothers, Healthy Babies Coalition (HMHB), text4baby provides pregnant women and new moms with information to help them care for their health and give their babies the best possible start in life. This text-based system includes several messages about newborn screening. Women who sign up for the service by texting BABY to 511411 (or BEBE in Spanish) will receive free SMS text messages each week, timed to their due date or baby’s date of birth. They will receive the texts until their baby turns one year old. More information can be found at: Text4baby
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