Previous Stories

The “One simple test can make a difference for your child” brochure is no longer being sent out with newborn screening card orders. There will be a ‘Newborn Screening Fact Sheet’ that will replace the previous brochures. As of August 1, to comply with new legislation, we ask that you no longer give out the ‘One simple test’ to your new parents in the hospital. If your facility is out of brochures, or will be before August 1, please contact our program.
(published July 5, 2012)

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

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

June 30, 2011 - State Government Shutdown Letter to Nursery and Laboratory Managers

As you may know, Minnesota state agencies are preparing for a shutdown of government services on July 1, 2011. Newborn Screening has been approved as a critical service but will be operating with limited staff.

Please note the following information regarding newborn screening services during a shutdown:

• Continue all newborn screening practices, including newborn hearing screening, as usual.
• Although we anticipate the reporting of abnormal results without delay, normal testing results may not be reported as timely.
• If you do not need to order newborn screening cards during the shutdown, please wait until full services are resumed. We will accommodate facilities that have urgent need.

We understand the difficulty that a shutdown of State government may present for you and the patients in your care. We suggest you monitor the state’s emergency and contingency planning website, www.bereadymn.com, bulletins and media publications to stay informed about this issue.

Please feel free to contact the Newborn Screening Program by phone or email (651-201-5466, 800-664-7772), or health.newbornscreening@state.mn.us with questions you have. We appreciate your strong support of our program.
(published June 30, 2011)

Learn More about the Genetic Information Nondiscrimination Act (GINA)

"With genetic testing becoming increasingly pervasive in medical care and our daily lives, three of the most prominent organizations in genetics—the Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education in Genetics, and Genetic Alliance have teamed up to produce educational materials about the Genetic Information Nondiscrimination Act (GINA), a landmark federal law that protects individuals from the misuse of genetic information in health insurance and employment."
(published June 22, 2010)

The materials are available at the following websites:
Genetic Information Nondiscrimination Act (GINA)

Updated Tools for Communicating Hearing Screening Results to Families

The Newborn Screening Program at the Minnesota Department of Health now has updated tools for hospitals to communicate hearing screening results to families. Easy-to-understand information sheets are now available in Spanish, Hmong, Somali, and English. Separate flyers are available for babies with REFER results and those babies who PASS nursery-based hearing screening.

Staff audiologists in the Newborn Screening Program indicate that the two-sided REFER sheets are ideal tools for use in communicating hearing screening results with both parents and primary care providers. When a baby has a REFER result at discharge from the hospital the nurse can complete the REFER sheet and fax the information directly to the baby’s clinic. A copy of this form can be given to the parents to take home as a reminder of the screening result and the follow-up appointment details.

For infants who PASS the initial hearing screen, the sheet reviews normal speech and language development and encourages families to check with their primary care providers if the baby is not meeting typical milestones. The staff of the Newborn Screening Program is delighted to make this important developmental information available to families whose first language is not English.

The Hearing Result sheets can be printed right from the Newborn Screening Program website. Hospitals can also order the Hearing Result sheets by calling the Newborn Screening Program at 651-201-5466 or 1-800-664-7772.
(published June 7, 2010)

Newborn Screening Hearing Screening in the Hospital

The New York Times article "Screening for Rare Genetic Disorders Now Routine in Newborns"

March of Dimes article "States Expand Newborn screening for Life-Threatening Disorders"