minnesota newborn screening program
Homebirths - Frequently Asked Questions
Who is responsible for collecting the newborn screening specimen?
Newborn screening is mandated by Minnesota Statutes 144.125 – 144.128; the statute establishes that the person attending the birth is responsible for educating parents about newborn screening, answering any questions parents may have, documenting in the medical record that a discussion occurred, and collecting the newborn screening specimen.
How should the specimen be collected?
Newborn screening specimens should be collected by heel-stick. Because normal values and cutoffs for the newborn screening assays are determined from samples collected by heel-stick, national standards require that all newborn screening specimens be collected in this manner. If a heel-stick cannot be done on an infant, contact the Newborn Screening Program for guidance.
When should the specimen be collected?
Specimens are most accurately tested when they are collected between 24 and 48 hours of age. All normal values and reference ranges for newborn screening tests are based on specimens drawn from infants during this age window. Specimens drawn later may increase the chance that the baby will suffer from the affects of the disease before treatment has begun.
For babies less than 24 hours of age at the time of collection, results for some disorders cannot be classified as negative because normal values are not established for this age window. If a specimen is drawn at less than 24 hours of age, the results will be reported as “Unsatisfactory,” and a repeat specimen will be required to ensure accurate screening results.
If the parent and practitioner schedules do not allow for specimen collection during the 24 to 48 hours timeframe, a specimen should still be sent as soon as possible even if the baby is older than 48 hours of age.
Minnesota state law (Minnesota Statute 144.966) requires all professionals attending a birth outside a hospital to provide information orally and in writing to parents regarding places where the parents may have their hearing screened and the importance of screening. Information on hearing screening can be found on the Hearing Screening page.
What if an infant has a family history of a disorder detected by newborn screening?
Please contact the MDH Newborn Screening Program before submitting a sample if a family has a history of a disorder on the newborn screening panel. At minimum, include information about the family history (what disorder the family has) on the screening card.
In addition to newborn screening, infants who have a family history of a disorder detected by newborn screening should have definitive diagnostic testing for that particular disorder. Parents with a child already affected with one of the disorders on the screening panel, should contact their medical specialist for guidance regarding testing and care in the newborn period for the new baby.
Is there newborn screening information for parents?
We encourage out-of-hospital birth providers to share the Prenatal Brochure with parents sometime during the prenatal period. As well, the Newborn Screening Fact Sheet should be given to every parent prior to Newborn Screening. All materials are available from the MDH Newborn Screening Program and you can obtain free copies by contacting the program directly at (800) 664-7772. A copy of the fact sheet is sent with every screening card. You are welcome to order as many educational materials as you need to share with expectant parents and other interested people. You may also want to encourage the families you care for to explore this website. They may be particularly interested in the parent-to-parent stories in the Screening Spotlight.
For babies with positive results, the MDH Newborn Screening Program has developed parent fact sheets for specific disorders.
What if the family doesn't speak English?
Prenatal Education Brochures and Newborn Screening Fact Sheets are presently available in English, Spanish, and Russian. These materials will be available electronically in additional languages soon (Hmong, Somali, and Karen).
Newborn hearing screening PASS and REFER sheets have been translated into Spanish, Hmong, and Somali.
Fact sheets about newborn screening in a variety of languages are found at the following sites:
Currently, newborn screening refusal forms are not available in any language other than English. In the event that a non-English speaking family refuses newborn screening, MDH recommends you have a translator available to both read the form to the family and answer any questions the family may have about newborn screening.
Can parents refuse newborn screening for their infant?
Parents have the option to refuse screening of their child. Parents must indicate their refusal in writing, and a copy must be submitted to the MDH Newborn Screening Program. The original form should be retained in the child’s medical chart with a copy provided to the parent(s). The refusal form serves as documentation that the parents were informed about the possible adverse outcomes of not performing newborn screening and that they accept legal responsibility for the consequences of their decision. If a family is refusing due to financial constraints, please contact the Newborn Screening Program to discuss the option for a fee-waived specimen card.
How do I obtain a copy of newborn screening results?
MDH mails a paper copy of the newborn screening results back to the individual or organization who submitted them. If you do not receive a baby’s screening results in a timely manner, call the MDH Newborn Screening Program at (800) 664-7772.
When do newborn screens need to be repeated?
Repeat newborn screen results are typically required after the initial screen has come back with borderline results for a specific disorder or when an initial specimen is unsatisfactory. Staff from the Newborn Screening Program will call you or the baby’s health care provider (if different) with information about the borderline results and a request for a repeat specimen. Repeat screening requires a new specimen card and the full fee. Contact the Newborn Screening Program at (800) 664-7772 if financial circumstances may prohibit a family from having a repeat newborn screen.
A repeat specimen is requested if the initial specimen was unsatisfactory. If, for example, too little or too much blood was applied to the card, or the specimen was contaminated because something was spilled on it, accurate results cannot be obtained and a repeat specimen is requested. Success in collecting screening specimens is dependent on operator experience. If you have only recently started collecting specimens or do so infrequently, you are more likely to have unsatisfactory results. More information and tips on proper specimen collection can be found in the Specimen collection section.Borderline Newborn Screen (PDF: 130KB/1 page)
What if a baby in my care has a positive newborn screening result?
For positive results, MDH immediately notifies by phone the infant’s health care provider listed on the screening card. MDH may also contact an appropriate specialist. Together with the specialist’s guidance, the health care provider should promptly contact the family and arrange for evaluation and diagnostic tests. You may want to discuss this possibility with the family and ask who they would want to be involved in their infant’s care in the rare event that results were abnormal and required immediate action.
What about false positive results?
Any screening methodology is subject to some false positive results. False positive results may be caused by the stress of birth; the specimen being collected prior to 24 hours after birth; poor specimen collection techniques; or the way the specimen was dried, stored, or transported. The MDH Newborn Screening Program establishes screening cutoff values to keep the number of false positives at a minimum while ensuring that affected infants are not missed (false negatives).
What is the chance that an infant will have one of the disorders found by newborn screening?
The chance that a baby will have one of the disorders detected by newborn screening is small. Each year, approximately 150 infants are diagnosed with one of the disorders. Additionally, it is estimated that 1 in 300 babies will be found to have a congenital hearing loss in Minnesota. In these cases, early diagnosis, treatment, or intervention may prevent many adverse outcomes associated with these conditions. Health care providers and families should treat all abnormal or refer screening results urgently and should complete recommended follow-up testing or evaluations without delay.
What is the Newborn Screening Program’s specimen storage policy?
After all of the newborn screening tests are complete, there is a small amount of blood (less than half of one milliliter) left on the specimen card. The Minnesota Department of Health (MDH) securely stores this leftover blood sample and the newborn screening results. For babies born after the Bearder, et al., v. State of Minnesota decision on November 16, 2011, MDH routinely destroys remaining leftover blood spots after 71 days for blood spots with negative results and 24 months for blood spots with positive results. All test results are destroyed after two years.
For babies that were born between July 1, 1997 and November 15, 2011, MDH has securely stored these residual screening specimens. Due to the ongoing litigation hold regarding the Bearder, et al., v. State of Minnesota lawsuit, these specimens may not currently be destroyed unless specifically requested by the parent.
MDH stores these specimens securely and in accordance with strict data and genetic privacy standards.
Who decides which disorders are included on the newborn screening panel?
Based on nationally accepted criteria, the Minnesota Department of Health Newborn Screening Advisory Committee makes recommendations on disorder inclusion to the Commissioner of Health. The Newborn Screening Advisory Committee meets two times each year to talk about newborn screening issues. Members include parents of affected children, advocacy groups, health care providers, hospital representatives, and other medical and educational experts. The Commissioner has final approval for the addition of new disorders to the screening panel.Updated Monday, 08-Oct-2012 11:03:15 CDT