Newborn Screening Information for Families:
Frequently Asked Questions

On this page:
General Questions

Do I need to ask for my baby to be screened?
How are screening costs covered?
I will not be delivering my baby at a hospital; can my baby still be screened?
Will my baby get the same test no matter where my baby is born?
If my family members are healthy, should my baby still be screened?
What if my baby looks healthy?
What causes the disorders?
How will I know my baby’s newborn screen results?
Who else has access to my baby’s newborn screen results?

Blood Spot Screening Questions

Will the heel-stick used to collect the blood spots hurt my baby?
Why do some babies need to have a repeat screen collected?
Is a “PKU test” the same as “newborn screening”?

Hearing Screening Questions

Why do some babies need another hearing test?
Can a newborn pass the hearing test and still have hearing loss?
How is a hearing screen different from an audiologic evaluation?

Pulse Oximetry Screening Questions

What can pulse oximetry screening detect in newborns?
What is critical congenital heart disease (CCHD)?
What is the treatment for CCHD?
Can a newborn pass the pulse oximetry screen and still have CCHD?


Baby under blanketGeneral Questions

Do I need to ask for my baby to be screened?
No. All Minnesota newborns will receive newborn screening unless a parent refuses in writing.

How are screening costs covered?
The cost of screening is typically included with birthing and nursery charges, which are usually covered by health insurance. If you are planning an out-of-hospital birth, newborn screening may or may not be covered by insurance. It is important to communicate with your midwife about screening costs.

I will not be delivering my baby at a hospital; can my baby still be screened?
Yes. Most Minnesota midwives are experienced in collecting blood spots and have a process in place for sending them to the Newborn Screening Program for testing. Thanks to a recent collaboration between Minnesota’s Newborn Screening Program and the Minnesota Council of Professional Midwives (MCCPM), many Minnesota midwives now have access to the necessary equipment to screen infants for hearing loss outside of the hospital. If you are planning an out-of-hospital birth, it is important to ask your midwife what newborn screening options they offer.

Will my baby get the same test no matter where my baby is born?
It depends. All states in the United States have newborn screening, but each state determines which disorders will be included on their newborn screening panel. If your baby will be delivered in a state other than Minnesota, it is important for you to learn about the newborn screening program in that state.

If my family members are healthy, should my baby still be screened?

Yes. Families with no family history of these disorders and/or parents who have already had healthy children can still have a child affected by one of the disorders on the newborn screening panel. Actually, most babies affected by one of these disorders have no family history.

What if my baby looks healthy?

Most babies with these disorders look and act normal and appear perfectly healthy. Newborn screening is designed to identify those infants at risk for one of the disorders on the newborn screening panel before it causes any health problems.

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 baby’s primary care provider to refer you to a genetic counselor to discuss the disorder and the potential cause.

How will I know my baby’s newborn screen results?
We encourage all parents to learn about their baby’s newborn screening results!

Blood spot screening results are mailed to the hospital or out-of-hospital birth provider that collected the screen. If your baby is considered to be at risk for one of the disorders on the newborn screening panel, Newborn Screening Program staff will contact your baby’s primary care provider or clinic to inform them of the result. Your baby’s primary care provider will then contact you to discuss next steps.

Hearing screening results will be provided to you immediately after the screening is complete. If your baby did not pass the hearing screen, additional follow-up is needed and will be discussed with you.

Once complete, all newborn screen results are sent to your baby's primary care provider. Ask your baby’s provider for the results at your first well-child visit.

Who else has access to my baby’s newborn screen results?
Only people who are authorized will see your baby’s results. This can include Minnesota Newborn Screening Program staff, the hospital where your baby was born or the out-of-hospital provider who delivered your baby, and your baby’s primary care provider.


Blood spot testBlood Spot Screening Questions

Will the heel-stick used to collect the blood spots hurt my baby?
A small needle is used to poke your baby's heel. Some babies cry when their heel is pricked, but the discomfort does not last long. The potential benefits of newborn screening, such as saving your baby’s life and preventing health problems, far outweigh the temporary discomfort that comes with the heel-stick.

Why do some babies need to have a repeat screen collected?Sometimes another screen is requested because the original blood spots collected were considered invalid (for example when not enough or too much blood was collected). Sometimes a repeat screen is requested for clinical reasons (for example babies weighing less than 1800 grams, babies that were transfused, or babies with borderline results).

Is a “PKU test” the same as “newborn screening”?
Yes, although this can be misleading. When newborn screening first began back in 1965, the only disorder screened for was phenylketonuria (PKU). Some health professionals will still refer to the newborn screen as the “PKU test” even though newborns are screened for PKU and more than 50 other disorders.


Baby hearing testHearing Screening Questions

Why do some babies need another hearing test?
Some babies need another hearing test because there is fluid in the ear, the baby was moving a lot, or there was too much noise in the testing room. Some babies need another hearing test because they have a hearing loss. Newborn hearing screening with follow-up testing is the only way to know for sure if your baby has a hearing loss.

Can a newborn pass the hearing test and still have hearing loss?
Yes. Some babies will hear well enough to pass the first hearing screen, but lose their hearing later in infancy or adulthood because of illness, infection, injury reaction to medications, or family history of a hearing loss. If you think your baby has difficulty hearing or is behind in speech and language skills discuss your concerns with your baby’s primary care provider and ask for your child’s hearing to be checked.

How is a hearing screen different from an audiologic evaluation?
Hearing screening is a quick way to determine whether or not there is a possibility of a hearing loss. If your baby does not pass the hearing screen, additional testing by an audiologist is needed. A complete evaluation by an audiologist is the only way to know for sure that your baby is hearing all the sounds important for speech and language development.


Disposable Pulse OximetryPulse Oximetry Screening Questions

What can pulse oximetry screening detect in newborns?
Pulse oximetry measures the amount of oxygen in your baby’s blood. Low oxygen levels can be a sign of critical congenital heart disease (CCHD) or other conditions such as breathing problems or infections.

What is critical congenital heart disease?
Congenital heart defects are the most common group of birth defects. Heart defects cause problems with the structure of the heart or the way blood flows through it. CCHD refers to heart defects that need to be fixed early to help prevent other health problems.

What is the treatment for CCHD?
Most babies with CCHD need surgery within the first year of life. However, each baby with CCHD will require a unique treatment plan developed for his or her particular heart defect.

Can a newborn pass the pulse oximetry screen and still have CCHD?
Yes. Pulse oximetry screening does not detect all cases of CCHD. It is important your baby receives regular checkups with a primary care provider and for you to watch your baby’s H.E.A.R.T. for signs of CCHD:

Heart rate – beating too fast or too slow?
Energy – overly sleepy or agitated?
Appearance – pale or blue skin?
Respiration – breathing too fast or too slow?
Temperature – cold to the touch?