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?
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?
Can I 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 spot 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 refuse newborn screening. 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 Options

Does newborn screening hurt?

The nurse uses a small needle to poke your baby's heal. The 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.

Can 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 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 spot and newborn screening results?

Testing for over 50 diseases uses up all or most of the blood drops taken from the baby. If your baby was born on or after November 16, 2011, MDH retains the leftover blood spots of negative tests for 71 days and 24 months for positive tests. After those time periods, the leftover blood spots are destroyed. The newborn screening program stores all test results for 24 months. After 24 months, all test 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 website, you can talk with your healthcare provider, you can call the newborn screening program at (800) 664-7772, or send an e-mail to newbornscreening@health.state.mn.us to to have your questions answered. The newborn screening program also has a free parent fact sheet that you can request, and the information on the fact sheet is included here.
Information for Parents

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Updated Tuesday, 31-Jul-2012 09:00:11 CDT