Newborn Screening General Information

What is newborn screening (NBS)?

NBS is a program that screens all babies around 24 hours of age for rare but serious disorders. Michigan law requires NBS to make sure babies who need treatment are found early. Most babies with these disorders seem healthy at birth but can become very sick in a short time. If not treated early, serious health problems, severe developmental delays and even death can occur. NBS is the best way to find nearly all babies who have these disorders as early as possible.

Newborn screening is made up of three separate parts:

Blood spot screening tests your baby's blood for different conditions.
Pulse oximetry screening checks for several kinds of problems with your baby's heart, called critical congenital heart disease (CCHD).
Hearing screening checks to see if your baby has varying hearing levels.

This website will tell you more about blood spot screening. You can learn more about hearing and CCHD screening by visiting Michigan.gov/EHDI or Michigan.gov/CCHD.

Blood spot screening:

Shortly after birth, your health care provider will collect a few drops of blood from your baby’s heel to fill six spots on a filter paper card. The card is sent to the State NBS Laboratory at the Michigan Department of Health and Human Services (MDHHS) where they are tested for nearly 60 disorders that benefit from early treatment.

What disorders are screened on blood spots?

In Michigan, blood spot screening looks for nearly 60 disorders that may affect:

Blood cells.
Brain development.
How the body breaks down nutrients from food.
Lungs and breathing.
Hormones.
How the body fights infections.

Congenital hypothyroidism, sickle cell disease and cystic fibrosis are some of the most common disorders. NBS may also find some babies who are healthy carriers of the disorders. A complete list of screened disorders and fact sheets are available online.

What happens if screening suggests a health problem?

The NBS Follow-up Program will alert your baby’s health care provider. You will get a call about what to do next, but it does not always mean your baby has a problem. Additional testing may be needed.

The NBS Program works closely with specialists who are experts on the disorders found by NBS. If your child has a positive screen, they will work with you and your primary care provider to navigate the next steps. It is important that you take your baby for any additional tests needed as babies can look healthy but become sick quickly.

What happens if my baby has one of these disorders?

Help is available if your baby is found to have a disorder. Treatment usually begins early and continues through life. Each year, newborn blood spot screening finds about 300 Michigan babies with these medical conditions.

If your baby has a disorder found through newborn screening, they may be eligible for benefits from MDHHS including Children’s Special Health Care Services. Their toll-free family phone line is 1-800-359-3722.

A Newborn Screening Nurse Consultant is available Monday through Friday during business hours to answer questions and offer support to families of infants and children who have been diagnosed with any of the NBS disorders. Call the toll-free number, 1-866-673-9939 and request a return call.

How is the cost of NBS covered?

Your health care provider will have an NBS card to collect your baby’s blood spots. Hospitals purchase these cards from the Michigan Department of Health and Human Services (MDHHS) and the cost is typically included in the birth and newborn nursery charges. If you deliver outside of a hospital, your midwife can determine if you qualify for a free screening. You may call 517-335-1400 with any questions.

How can I access a copy of my child's screening results?

Your child’s health care provider can provide your child’s newborn screening results. The NBS Program makes them available to health care providers through the Michigan Care Improvement Registry (MCIR). The results are usually available within 2 weeks.

Parents can directly access their child’s result from MDHHS by submitting a patient access to records request. More information and instructions are available on the lab services page.

What happens to my baby's blood spots after screening?

Six blood spots are collected to make sure the laboratory has enough blood to complete all tests. How much the lab uses depends on their quality and if any tests need to be re-checked. Any blood spots that are not used are safely stored. While MDHHS policy allows blood spots to be stored for 100 years, our current practice is to keep blood spots for 35 years. Blood spots dating back to 1991 are currently in storage.

While in storage, blood spots may be used by the state lab to perform quality control tests and improve newborn screening or for your personal use, if needed. To request blood spots for personal use, a completed MDHHS-6122 form and accompanying documents must be returned to MDHHS.

If you do not want your child’s blood spots stored after screening is completed, you can request they be destroyed. Persons over 18 can also request their own blood spots be destroyed. To request destruction of blood spots, a completed MDHHS-5683 form and accompanying documents must be returned to MDHHS.

With parental consent, blood spots left over after newborn screening may be made available for future medical research through the Michigan BioTrust for Health. To learn more, please visit Michigan.gov/BioTrust.

What is the Michigan BioTrust for Health?

The BioTrust is a program within MDHHS that oversees the research use of stored blood spots. Families can choose whether to participate in de-identified research by marking their decision on the BioTrust consent form, provided around the time of newborn screening.

MDHHS only approves research that intends to better understand diseases or improve public health. Past research has: