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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 250 Michigan babies - one in every 400 to 500 births - are found to have a disorder detected by newborn screening.    

Michigan Newborn Screening Main Page 
Michigan Biotrust for Health Main Page 

Q. When did NBS begin?

Q. Why are six spots collected?

Q. How many disorders can be found today?

Q. What happens if my baby has a positive (abnormal) screen?

Q. How many babies are found through blood spot screening?

Q. What happens to the NBS dried blood spot card after testing is complete?

Q. What is Michigan's newborn screening law?

Q. What happens when a baby is born at home?

Q. How much does newborn screening cost?

Q. How can parents learn about newborn screening?

Q. When is NBS done?

Q. What is the Michigan BioTrust for Health?

Q. How is NBS done?

 

Q. When did NBS begin?
Newborn screening for a rare metabolic disease called phenylketonuria (PKU) 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 loss and critical congenital heart disease. If these disorders are not found and treated soon after birth, permanent disability, illness or death may result.

Q. How many babies are found through blood spot screening?
Each year, more than 250 babies, or about 1 in 400 to 500 births, are found to have one of the disorders. Over the years, approximately 6,000 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 $166.38 for the first screen. This fee supports the costs of screening, follow-up, and coordination of confirmatory testing 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. When is NBS done?
Whether a baby is born in the hospital or at home, NBS should be done between 24 and 36 hours after birth.

Q. How is NBS done?
A few drops of blood are drawn from the heel. The blood sample is used to fill six circles on a filter paper card 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 six spots collected?
Six 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 six 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 card after testing is complete?
Five or six blood spots are collected to ensure there is enough for all of the newborn screening tests. If there is an abnormal testing value, the lab has enough spots to double-check the result. This reduces the need to perform a second blood draw and helps ensure that newborns who need care get it as soon as possible. Once newborn screening is done, any unused blood spots are stored for up to 100 years by MDHHS. Blood spots are de-identified before being sent for long-term storage at a secure site called the Michigan Neonatal Biobank.  

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 specimen and send it to the state laboratory.

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 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 specimens more available for medical and health research. Learn more at www.michigan.gov/biotrust.