Michigan Newborn Screening Questions and Answers
Newborn Screening is a public health program required by Michigan law to find babies with rare but serious disorders that require early treatment. All babies need to be tested in order to find the small number who look healthy but have a rare medical condition. Babies with these conditions seem healthy at birth but can become very sick in a short time. Each year more than 200 Michigan babies - one in every 500 to 600 births- are found to have a disorder detected by newborn screening.
Q. When did NBS begin?
Newborn screening for a rare metabolic disease called PKU (phenylketonuria) began in 1965. PKU causes severe developmental delay and disability, but can be treated by limiting the amount of protein in the diet. Today, a child with PKU can have normal development when detected by NBS and treated early.
Q. How many disorders can be found today?
The number of disorders on the NBS panel has increased over the years as new technologies and treatments became available. The screening panel now includes 50+ disorders including hearing. If these disorders are not found and treated soon after birth, permanent disability, illness or death may result.
Q. How many babies are found?
Each year, more than 200 babies, or about 1 in 500 to 600 births, are found to have one of the disorders. Over the years, nearly 4,000 Michigan babies have been diagnosed and received treatment as a result of NBS.
Q. What is Michigan's newborn screening law?
Michigan's newborn screening law is part of the public health code . This law designates the state public health laboratory as a centralized site to perform NBS, and establishes a fee for testing. It allows blood specimens to be used for medical research under certain conditions, and also lets parents ask the hospital to draw a second specimen to keep for themselves.
Q. How much does newborn screening cost?
The current cost is $122.35 per baby. This fee supports the laboratory costs of screening, follow-up, and medical management for infants and children affected by the disorders. Hospitals typically purchase a supply of newborn screening cards. The cost is included in the birthing and newborn nursery charges that are usually covered by insurance. The fee can be waived for families with financial hardship.
Q. How is NBS done?
A few drops of blood are drawn from the heel. The blood sample is used to fill five circles on a filter paper card (shown below) and allowed to dry. It is then sent to the state public health laboratory at the Michigan Department of Health and Human Services (MDHHS) for testing. These samples are often called dried blood spots (DBS).
Q. Why are five spots collected?
Five spots are usually collected to be sure there are enough for all the tests. Sometimes not all the spots are suitable for testing, so it helps to have more than are needed. In the event there is a positive (abnormal) test, the lab can double check the result with the extra spots. Having five spots available limits the number of newborns who need to have their blood drawn again.
Q. What happens if my baby has a positive (abnormal) screen?
When there is a positive screen, parents will be contacted by their baby's physician. Sometimes only a repeat screening test is needed. In other instances, the baby will be referred to a medical management center for a diagnostic work-up and treatment if needed. Specialists will be available to work with the family, explaining the condition and next steps that should be taken to assure the best possible health outcome for a baby.
Q. What happens to the NBS dried blood spot sample after testing is complete?
The laboratory saves one full blood spot circle for use by the child or family in case it is ever needed in the future. Because most babies have normal results and additional testing is not needed, a couple extra spots are often left over. All directly identifiable information (name, address, birth date, etc) is removed from these spots. They are labeled with a code, and then stored at the Michigan Neonatal Biobank, the storage facility for the Michigan BioTrust for Health.
Q. What happens when a baby is born at home?
Babies born at home should receive newborn screening. The midwife or birth attendant should collect the sample and send it to the state laboratory. Parents planning a home birth can call (517) 335-1966 ahead of time to purchase a newborn screening card.
Q. How can parents learn about newborn screening?
Every hospital receives newborn screening brochures that should be given to parents when a baby is born. Efforts are also underway to enhance outreach education about newborn screening for expectant parents, so they will be aware of newborn screening before delivery. More detailed information about newborn screening in Michigan can be found at www.michigan.gov/newbornscreening.
These national websites also provide general information about newborn screening:
March of Dimes NBS Overview
March of Dimes "A Parent's Guide to Newborn Screening" video
March of Dimes "A Parent's Guide to Newborn Screening" video en ESPAÑOL
National Library of Medicine NBS Resources
National Newborn Screening and Genetics Resource Center
Save Babies Through Screening Foundation
STAR-G (Screening, Technology and Research in Genetics)
Q. What is the Michigan BioTrust for Health?
The BioTrust is a public health initiative to make leftover newborn screening blood spot samples more available for medical and health research. Learn more at www.michigan.gov/biotrust.