Prenatal Education

Newborn Screening

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minnesota newborn screening program

Prenatal Education

On this page:
Introduction
Information About Newborn Screening
Resources

Introduction

Minnesota's newborn screening law (Minnesota Statutes §144.125) was revised during the 2012 legislative session. The following materials are available for prenatal care providers to discuss newborn screening with expectant parents.

Recommendations for Prenatal Care Providers:

		Give a newborn screening prenatal educational brochure to expectant parents
		Have a conversation with expectant parents about newborn screening
		Answer any questions or concerns expectant parents may have about newborn screening and refer them to this website

The Newborn Screening Program has created the following materials to aid in this discussion:

		'Prenatal Education Brochures’- In a clinical setting, we recommend providing this brochure to expectant parents during their initial visit and during a third trimester educational visit. In a prenatal education setting, please provide this brochure to expectant parents during a discussion about newborn screening. This discussion could occur any time during the prenatal period but may be most beneficial during the third trimester.
		'Prenatal Provider Folders' - to be used by providers and educators for discussing newborn screening and answering any questions expectant parents may have.

Education Materials Ordering Form (PDF: 147KB/1 page)

What expectant parents should know about newborn screening:

When their baby is 24-48 hours old, the birth facility will take a few drops of blood from their baby’s heel and send it to MDH for screening.
Disorders screened for are hard to detect clinically. Without newborn screening, these disorders might not be diagnosed until damage has already been done.
The disorders screened for in Minnesota are treatable.
Affected babies may look perfectly normal at birth.
If their baby has a positive newborn screen, their baby’s primary care provider will call them and explain the next steps.
They have the option to decline screening.

What expectant parents should know about newborn hearing screening:

The birth facility will arrange for newborn hearing screening. Newborn hearing screening and follow-up is the only way to find hearing loss early.
A child with hearing loss, even a mild loss, may have difficulty with speech and language development. Language starts to develop soon after birth, before the signs of hearing loss are obvious.
Hearing loss is not easily detected by parents or providers without hearing screening.

Please take a moment to visit the rest of this section for additional information about newborn screening to assist in these discussions. If questions come up that are not answered here, please call Newborn Screening Program staff at 651-201-3248 or 800-664-7772.

Information About Newborn Screening

What is newborn screening and what are its benefits?
Newborn screening identifies babies at risk for over 50 heritable and congenital disorders, which, if left untreated, can cause severe illness, developmental delay, or death. Early identification and intervention can help prevent most health problems caused by these disorders.

When a baby is 24 to 48 hours old, a few drops of blood are collected from the baby’s heel and placed on a newborn screening card and sent to the MDH Newborn Screening Laboratory. Some of the blood spots on the newborn screening card remain on-site at the Newborn Screening Program laboratory to test for a subset of the disorders on the newborn screening panel. The remaining blood spots are sent to the laboratory at the Mayo Clinic in Rochester, MN. Where they test for the remaining disorders on the newborn screening panel. The card includes information about mom and baby that allows MDH to accurately interpret the results and contact the baby’s health care provider if further testing is needed.

What is newborn hearing screening and what are its benefits?
Newborn hearing screening screens babies for hearing loss in the range where speech is heard, which, if left unidentified, could lead to speech and language delays. Since language skills start to develop right after birth, early identification and intervention provide the opportunity for infants with hearing loss to maximize their linguistic and communicative development.

When a baby is at least twelve hours old, a hearing screen will be performed by instruments that either record the baby’s brain activity (Automated Auditory Brainstem Response) or measure how well the ear is functioning (Otoacoustic Emissions) in response to soft tones. For both AABR and OAE, a computer measures the infant’s response and immediately reports the hearing screen result.

How many babies each year are found with one of the conditions screened for by newborn screening?
The Newborn Screening Program now identifies over 350 babies yearly whose lives are improved or saved by newborn screening.

Who is responsible for collecting the newborn screening blood spots?
The person attending the birth is responsible for collecting the newborn screening blood spots.

How long does the blood spot collection take?
In general, it takes a few minutes.

Who is responsible for performing the newborn hearing screen?
Newborn hearing screening can be performed by nurses, midwives, audiologists, volunteers, and other trained personnel.

How long does the newborn hearing screening take?
In general, it takes approximately ten minutes.

What disorders are tested for by newborn screening and newborn hearing screening?
The newborn screening panel includes metabolic disorders (such as phenylketonuria [PKU]), endocrine disorders (such as congenital hypothyroidism), primary immunodeficiencies (such as severe combined immuno deficiencies [SCID]), hemoglobinopathies (such as sickle cell anemia), cystic fibrosis, and hearing loss.

Disorder Information

What if an infant has a family history of a disorder detected by newborn screening?
If the MDH Newborn Screening Program is made aware of the family history, staff will be able to speed up the reporting of the results to the infant’s primary care provider. In addition to newborn screening, definitive diagnostic testing for that particular disorder should be pursued. 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.

How can parents obtain their baby’s newborn screening results?
Parents can obtain their baby’s newborn screening results from their baby’s primary care provider. The results are sent to the baby’s birth facility three to seven days after birth and entered into the baby’s medical record. We encourage all parents to ask for their baby’s newborn screening results at the first well baby visit. Newborn hearing screening results, on the other hand, are conveyed to the parents immediately following the screen by the staff administering the hearing screen.

What happens if a baby is identified as being at risk for one of the disorders?
If a baby has a positive newborn screen, the baby’s healthcare provider is instructed to call the family and explain the next steps. Diagnostic testing is then required to confirm the screening results.

If a baby receives a REFER (did not pass) result on newborn hearing screening, further testing is needed to confirm a hearing loss.

What happens to the cards after screening?
Blood spots from babies with normal newborn screening results will be stored for 71 days. Blood spots from babies with positive results will be stored for 24 months. All test results will be kept for 24 months. Blood spots and test results are destroyed following the retention period unless the parent or guardian elects to have their child’s blood spot or test results retained for a longer period.

Before the blood spot is destroyed, it may be used to ensure laboratory quality assurance and improvement, help calibrate equipment, or improve existing newborn screening tests. This type of work only uses anonymous blood spots and is done so all Minnesota babies have access to the best newborn screening program possible.

What options do parents have?
Parents have several options regarding newborn screening.

Parental Options

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).

Information for Parents

Newborn hearing screening PASS and REFER sheets have been translated into Spanish, Hmong, and Somali.

Minnesota Newborn Screening Forms

Fact sheets about newborn screening in a variety of languages are found at the following sites:

New England Newborn Screening Program
California Department of Public Health
New England Regional Genetics Group

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.