Newborn Screening Information for Families: Frequently Asked Questions - Minnesota Dept. of Health

Newborn Screening Information for Families:
Frequently Asked Questions

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General screening 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 partnership with the Minnesota Council of Professional Midwives (MCCPM), many Minnesota midwives have access to the necessary equipment to screen infants for hearing loss outside of the hospital. Many midwives also offer pulse oximetry screening. 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 60 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 doctor to refer you to a genetic counselor to discuss the disorder and the potential cause.

How will I get my baby's results? Hearing and pulse oximetry screening results are available as soon as screening is complete. We encourage parents to ask their birth provider or person performing the screen about their baby's results.

The blood spot screening process takes a few days. Once complete, all results are mailed to the hospital or out-of-hospital birth provider who collected the screen. If your baby has an abnormal (positive or bordeline) result, our staff will also contact your baby's doctor or clinic as soon as possible. Your baby's doctor will then contact you to discuss next steps. If the results show that your baby may have sickle cell trait, we will also mail you a letter directly that explains the result and what you should do next.

We encourage all parents to ask their baby's doctor about screening results at the first well-child visit.

Who else has access to my baby's newborn screening results? Your baby's privacy is important. 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 doctor.

Blood 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 under 2000 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 babies are screened for more than 60 disorders.

What happens to any leftover blood spots after screening? When blood spot screening is complete, a small amount of blood (less than a dime) is sometimes left over. This leftover blood will be stored at the Minnesota Department of Health to allow for any necessary follow-up testing, to help make sure screening is accurate, and to develop new newborn screening tests for Minnesota babies.

Leftover blood spots are NOT used for research unrelated to newborn screening and are not shared with any external partners or other government agencies without written consent from parents or legal guardians. For more information about how newborn blood spots may be stored and used in Minnesota, visit Parental Options for Families and Minnesota Statute 144.125.

Hearing 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 doctor 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.

Is it okay to wait until my baby is older before I schedule follow-up testing with an audiologist? No. Prompt follow-up, ideally between 2-4 weeks of age, ensures that your baby will sleep long enough to complete the needed testing. Babies who do have permanent hearing loss have better speech and language outcomes the earlier the hearing loss is detected.

Pulse 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 (CCHD)? 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?