Newborn Screening

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•	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 web site, 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
•	Newborn Hearing Screening – Follow Up, Say Experts It’s one of the first tests a newborn baby gets — the newborn hearing screening. According to the New York Times, 97 percent of babies born in the U.S. get the screening, but nearly half of those who fail it don’t get a follow-up. (published May 14, 2010) "Strollerderby" article on the importance of hearing screening follow-up New York Times article on Newborn Hearing Screening 'What to Do When a Newborn Can't Hear'
•	Students make blankets for babies newly diagnosed with hearing loss A group of students who go to schools in the Minnesota River Valley Special Education Cooperative recently used their “Deaf and Hard of Hearing Outings” day to make blankets and cards for babies newly diagnosed as deaf or hard of hearing. The kids worked with Minnesota Hands & Voices’ Coordinator, Candace Lindow-Davies, who, along with her staff, will distribute the blankets and cards. (published May 12, 2010) Complete story - Students make blankets for babies Minnesota Hands and Voices website
•	A true story from the newborn screening files about how filling a screening card out correctly can save a baby’s life. (published April 30, 2010)
•	Grupo la Fortaleza Una serie de actividades de apoyo para familias de habla hispana que tienen ninos con perdida auitiva total o parcial. Sabado 22 de mayo, de 1:00 a 3:00 PM. Para mayor informacion llame a Carmen DiPrima a 651-604-3718. More information on a gathering for Spanish speaking families of children with hearing loss is available from Minnesota Hands and Voices. (published April 28, 2010) Informacion sobre Grupo la Fortaleza
•	Genetic Alliance YouTube Playlist The Genetic Alliance’s YouTube channel provides a selection of introductory videos on newborn screening. (published April 28, 2010) Genetic Alliance YouTube Channel
•	Camp Courage for children with sickle cell disease and other blood disorders or cancers Camp Courage together with Children’s Hospitals and Clinics –Minneapolis and The Miracles of Mitch Foundation sponsor a week of summer camp for children with sickle cell disease and other blood disorders or cancers. More information on this program for children aged 7 to 17 is available at the Courage Center website or by calling 763-520-0504. (published April 28, 2010) Courage Center Specialty Camp Programs Web site
•	Pop star Joey McIntyre and his wife Barrett’s youngest son, Rhys Edward, failed a routine newborn hearing screen shortly after birth. Recognizing that early intervention can make a huge difference in speech and communication, Barrett and Joey enrolled Rhys Edward in hearing therapy programs at one month of age. (published April 26, 2010) Joey McIntyre Opens Up About Son's Hearing Loss
•	Whatman, part of GE Healthcare, recently announced an Urgent Medical Device Correction associated with the potential for detachment of the ‘903’ paper from the Newborn Screening Card. Hospitals and birthing facilities have been made aware of this potential issue, although we do not anticipate this to cause any significant impact. (published April 6, 2010) Whatman Device Correction Letter (PDF: 31KB/2 pages)
•	Raising awareness of the benefits of newborn screening (published April 5, 2010)
		Shortly after actor Scott Baio and his wife Renee gave birth to their daughter, Bailey, they learned that little Bailey had a positive newborn screen for glutaric acidemia type I (GA-1), a serious metabolic disorder that is screened for in many states, including Minnesota. Thankfully, follow-up testing showed that Bailey did not have GA-1. Their experience with Bailey’s newborn screening result inspired them to start the Bailey Baio Angel Foundation, dedicated to raising awareness of the importance of newborn screening. You can get information about the episode at “TheDoctorsTV”, or you can download and view the episode through Save Babies Through Screening Foundation, Inc..
•	Report shows increase in home births (published March 9, 2010)
		A new CDC report (Trends and Characteristics of Home and other Out-of-Hospital Births in the United States, 1990-2006) finds that the rate of planned home births is increasing nationwide and especially in Minnesota. The Minnesota Newborn Screening Program reaches out to families who plan to deliver their babies at home with a special section of our web site, Planned Homebirths - Overview. Babies born at home should have access to the life-saving benefits of newborn screening. The CDC report on home births can be found in the resources section of the home birth areas, Planned Homebirths - Resources. Staff at the Newborn Screening Program welcome calls and email from families planning home births who have questions about newborn screening.
•	The Test That Saved My Baby's Life. (published March 5, 2010)
		Screening every newborn for rare genetic diseases can seem unnecessary and invasive -- unless your child is the one who is diagnosed. "The Test That Saved My Baby's Life / Parents' Magazine"
•	Danyella's Story (published February 16, 2010)
		Meet Danyella, a beautiful little girl who benefited from newborn screening. Her diagnosis of sickle cell disease at birth has made a huge difference in helping her parents and her care providers keep her healthy and happy. Read Danyella's story.
•	Mom Advocates for Hearing Screening (published February 3, 2010)
		Nearly 14 years ago, Rhonda Sivarajah found that that her son, Sonjay, had a profound hearing loss in both ears. Unfortunately, that diagnosis didn’t come until Sonjay was 2 years old. Today, Rhonda is vice chairwoman of the Newborn Hearing Screening Advisory Committee, and is devoted to helping develop better hearing screening standards for all Minnesota newborns, to ensure that proper screening, follow-up and resources are available for all Minnesota babies and their families. Read Rhonda and Sonjay’s story in this Star Tribune article
•	Video: A Family's Mission to Increase Newborn Screening (published October 24, 2009)
		Watch a short video about one family’s loss and their newfound quest to spread the word about the importance of newborn screening. Read Transcript
•	H1N1 Guidelines for Children with Newborn Screening Disorders (published September 1, 2009)
		The CDC encourages parents and clinicians to be aware of the increased risk of infection and complications from H1N1 flu among infants and children. In guidance published on the CDC Web site, national experts identify children at special risk. Some of these children have conditions identified by newborn screening. Families of children with disorders such as sickle cell disease, MCAD, cystic fibrosis, and other conditions found by newborn screening should check with their primary care providers and specialty care providers for guidance on prevention of the H1N1 flu; recognition of symptoms in young children; immunization; and approaches to illness. Read the CDC guidelines
•	Guidelines and Resources for Audiologists now available online (published June 11, 2009)
		The informational packet recently mailed to Minnesota audiologists is now available online! Minnesota Newborn Hearing Screening Guidelines and Resources for Audiologists (PDF: 2MB/126pages)
•	Minnesota Newborn Screening Program Highlighted in Minnesota Medicine (published March 16, 2009)
		Read about the Minnesota Newborn Screening Program and how one lucky boy was diagnosed before it was too late. Read the article "Living Proof" in Minnesota Medicine.
•	States Expand Newborn Screening for Life-Threatening Disorders (published February 19, 2009)
		A new March of Dimes report finds that nearly all newborns born in the United States are being given the opportunity to have screening for life-threatening disorders. The report also provides a state-by-state Newborn Screening Report Card – see how Minnesota did on the map and read more about the report below: 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"
•	Newborn Screening Program offers a "Screening Spotlight" (updated February 9, 2009)
		Families can share stories about their experiences with the benefits of newborn screening. Read submitted stories here.
•	More screening stories added to Screening Spotlight (published January 26, 2009)
		Read about how Amanda, Ashley, and Kendra were impacted by newborn hearing screening and how comprehensive newborn screening may have saved a young girl's life.
•	Celebrities Endorse Universal Newborn Screening. (published January 9, 2009)
		Pro football Hall of Famer, Jim Kelly, and other celebrities endorse newborn screening on Kelly's Web site, Hunter's Hope.