minnesota newborn screening program

Frequently Asked Questions
(New Parents)

On this page:
Why is newborn screening so important and why should every baby have it?
Why is newborn hearing screening important?
What are the disorders tested for by the Newborn Screening Program?
Does my baby have to have newborn screening?
How do I opt out?
Does newborn screening hurt?
If my family members are healthy, does my baby still need newborn screening?
Can my baby have a disorder even if he/she looks healthy?
What causes the disorders?
Do I get to see my baby’s results?
What happens if the result is positive?
What does the Minnesota Department of Health do with my baby’s blood sample and newborn screening results?
Where can I get more information?

Why is newborn screening so important and why should every baby have it?

Newborn screening can save babies’ lives and help them begin life healthy. Finding a disorder by newborn screening and treating the baby right away is the key to preventing health problems. Affected babies may look perfectly normal at birth. Unless newborn screening is done, the disorder may stay hidden and cause permanent damage to the baby.

Why is newborn hearing screening important?

Identifying hearing loss early is important. Speech and language start to develop right after birth, even though babies don’t usually talk until about 1 year of age. A child with hearing loss may have difficulty with speech and language development. If a baby has a hearing loss, it is usually not noticeable to parents or doctors. Screening and follow-up testing are the best ways to find hearing loss early, so babies get the help they need.

What are the disorders tested for by the Newborn Screening Program?

Your baby will be tested for more than 50 disorders that:

  • affect how the body breaks down proteins (such as PKU)
  • cause hormone problems (such as congenital hypothyroidism)
  • cause blood problems (such as sickle cell disease)
  • affect how the body makes energy (such as MCAD)
  • affect breathing and getting nutrients from food (such as cystic fibrosis)
  • affect language and communication (such as hearing loss)

Disorder Information

Does my baby have to have newborn screening?

No. According to the state law, parents may choose to opt-out of newborn screening or to have the blood sample and results destroyed. If parents opt-out of screening or would like the sample and results destroyed, a special form must be signed. Newborn screening can save your baby’s life and protect your baby’s health. Newborn screening is important, and the risks of not screening are serious.

Parental Opt-Out Options & Forms

How do I opt out?

In Minnesota, you have the right to not receive the life saving benefits of newborn screening. If you refuse newborn screening, you must indicate your refusal in writing on the opt-out form from the Minnesota Department of Health.

The opt-out form documents that:

  • you were told the risks of not screening
  • you accept legal responsibility for any consequences (death or health problems) of not screening your baby

Parental Opt-Out Options & Forms

Bring the completed opt-out form to the hospital and give to your baby's healthcare team.


Parental Opt-Out Options & Forms

Does newborn screening hurt?

The nurse uses a small needle to poke your baby's heal. Any discomfort a baby feels does not last long. The benefits of newborn screening, such as saving your baby’s life and preventing health problems, far outweigh the discomfort that comes along with the heel-stick.


If my family members are healthy, does my baby still need newborn screening?

Yes. Most babies affected with one of these disorders do not have a family history of the disorder.

Can my baby have a disorder even if he/she looks healthy?

Most babies with these conditions look and act normal and seem perfectly healthy. The newborn screening test helps your doctor catch a problem with your baby before it makes him or her sick.

What causes the disorders?

With over 50 disorders screened for there are many answers to this question. Some of the disorders on the screening panel are genetic and others are not. Even the ones that are genetic have rarely affected other family members before the baby's birth. If your baby is found by screening to have a hearing loss or one of the other disorders, you can ask your doctor to refer you to a genetic counselor for answers for your family.

Do I get to see my baby’s results?

Yes. Screening results are sent by MDH to the hospital where your baby was born. The hospital then sends the results to your baby's doctor. We encourage all parents to learn about their baby’s newborn screening results. Ask your baby’s doctor for the newborn screening results at one of your first clinic visits.

What happens if the result is positive?

If your baby has a positive newborn screen, your baby’s doctor will call you and explain what the next steps are. Usually, more testing must be done to know if the baby has the disorder. Just like in all screening tests, there can be false positives results in newborn screening. Further labwork or hearing testing will quickly determine whether or not your baby has a hearing loss or other disorder. Babies who have a disorder identified by newborn screening often need special treatment immediately. Sometimes this means taking medication, seeing a specialist, or staying on a special diet.

What does the Minnesota Department of Health do with my baby’s blood sample and newborn screening results?

Testing for over 50 diseases uses up all or most of the blood drops taken from the baby. The Minnesota Department of Health securely stores the leftover blood sample. If your baby was born on or after November 16, 2011, MDH retains the leftover blood sample for 71 days and the newborn screening results for 24 months. After 71 days the sample is destroyed and after 24 months the results are destroyed. 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.

Where can I get more information?

In addition to looking through the information on this Web site, you can talk with your healthcare provider or you can call the newborn screening program at (800) 664-7772 or send an e-mail to newbornscreening@health.state.mn.us to have your questions answered. The newborn screening program also has a free informational parent brochure that you can request, and the information in this brochure is included on this Web site.
Information for Parents - Parent Brochures

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Updated Monday, 23-Jan-2012 19:26:11 CST