What Conditions are Screened For in Michigan?
Amino Acid Disorders
Benign Hyperphenylalaninemia (H-PHE)
Biopterin Defect in Cofactor Biosynthesis (BIOPT-BS)
Biopterin Defect in Cofactor Regeneration (BIOPT-REG)
Citrullinemia, Type I (CIT)
Citrullinemia, Type II (CIT II)
Classic Phenylketonuria (PKU)
Maple Syrup Urine Disease (MSUD)
Tyrosinemia, Type I (TYR I)
Tyrosinemia, Type II (TYR II)
Tyrosinemia, Type III (TYR III)
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Michigan
Newborn Screening is a public health program required by Michigan law to find babies with rare but serious conditions 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, which is one in every 450 births, are found to have a condition detected by newborn screening.
When conditions are detected early, your baby can be started on an appropriate treatment plan that will help ensure the best outcome possible. Since these conditions are so time-sensitive, it is important that you give the birth hospital the name of your baby’s doctor as well as your current phone number and address so you can be reached if necessary after your baby leaves the hospital. The newborn screening follow-up staff will notify your baby’s doctor if screening suggests a health problem. You will be contacted regarding the next steps to take. With some results you will be asked to take your baby for a repeat newborn screen blood test. Other results may require additional testing at a pediatric sub-specialty clinic. Taking your baby for needed follow-up as soon as possible is crucial for you baby’s health.
How is Newborn Screening Paid for in Michigan?
The newborn screening fee is calculated each year and supports the laboratory costs of screening, follow-up, and medical management for infants and children affected by the disorders. The current cost is $135.29 per baby for initial screening. The current cost for repeat screening is $122.60. The cost is included in the hospital’s birthing and newborn nursery charges that are usually covered by insurance. If your child is born at home, a screening kit must be purchased. The fee can be waived for families with financial hardship. Please call 517-335-8887 to see if you qualify for a free screening.
Policies and Resources
While it is discouraged, parents may refuse to have their newborn screened for the various hidden conditions at birth. If parents object to newborn screening, they will be asked to sign a document that indicates that they have been informed of the risk to their newborn if screening is not performed. Birthing hospitals and attendants should develop this document with their legal department. A sample of the document may be found here: Parental Refusal Form.
A copy of the signed document will be forwarded to the newborn screening follow-up program.
Support for families:
One of the concerns families may have when they find out their child has been diagnosed with a condition through newborn screening is the increased cost of health care. Michigan offers many programs to help families take care of their loved ones. Since it is sometimes difficult for families to navigate state programs and available resources, a newborn screening nurse consultant is available to answer questions and offer support to families of infants and children who have been diagnosed with any of the newborn screening disorders. Call the toll free number (1-866-673-9939) and request a return call.
Children's Special Health Care Services (CSHCS) is a program within Michigan Department of Health and Human Services (MDHHS) to find, diagnose, and treat children in Michigan who have chronic illnesses or disabling conditions. Before a person can apply for CSHCS, MDHHS must ensure their diagnosis qualifies. If it does, MDHHS pays for needed medical services related to the child’s diagnosis.
CSHCS will pay for a diagnostic evaluation with an appropriate pediatric sub-specialist for any Michigan infant who fails a newborn screening, regardless of family income. If the child has private health insurance coverage, the insurance must be used first. Children diagnosed with a disorder on the Michigan newborn screening panel will usually qualify for CSHCS.
There is a fee to join CSHCS. This fee is waived if your child receives Medicaid or MIChild. Some ways that CSHCS can help:
- Payment for your child to see an approved sub-specialist
- Payment of insurance co-pays and deductibles related to your child’s CSHCS qualifying diagnosis
- Payment for prescriptions related to your child’s CSHCS qualifying diagnosis
- Payment of health insurance premiums, including COBRA, if it is cost-effective to the program
- Transportation help to see an approved sub-specialist
- Care coordination by a public health nurse
- Payment for some special formulas
Please call your local health department or the Family Phone Line (1-800-359-3722) to learn more about CSHCS.
The Children with Special Needs (CSN) Fund provides equipment and services for children with special health care needs that no other resources provide (including state or federal programs). In 1944, Dr. James T. Pardee, a founder of Dow Chemical, made a generous bequest of Dow Chemical Company stock to support children with special needs. While Dr. Pardee’s gift comprises the major portion of the Fund, many other organizations, businesses, individuals, and families have contributed over the years. Today the CSN Fund has grown to over $19 million dollars and has helped thousands of families of children with special needs. The CSN Fund is comprised entirely of private dollars and is administered through MDHHS. More information about the CSN Fund can be found on the CSN Fund website.
The Family Support Network of Michigan (FSN) is for families who have children with special health needs. FSN helps families come together for emotional support. Trained parent volunteers offer practical suggestions for day-to-day living.; Some of the services include:
- Parent support groups
- One-on-one support
- Training programs for parents
- Information about programs for brothers, sisters, fathers and grandparents
- Family social events
- Information about local, state, and national resources
Call the Family Phone Line at 1-800-359-3722 for more information.
Contact your local health department if you would like information about other programs and agencies.
Storage and Use of Blood Spots:
The few drops of blood taken from a baby’s heel for newborn screening are referred to as blood spots. Often parts or whole blood sports end up not being used. Once newborn screening is done in Michigan, the unused blood spots are stored up to 100 years. These stored blood spots may be used by the state lab to help ensure that newborn screening detects those at risk. One blood spot is also kept by the state lab for personal use, if needed. Parents have used this blood spot to help diagnose a disease in their child or to find reasons for a child's untimely death. The rest of the leftover blood spots are stored at a secure site, the Michigan Neonatal Biobank. These stored blood spots may be used for research approved by the Michigan Department of Health and Human Services (MDHHS).
The Michigan BioTrust for Health (BioTrust) is a program created by MDHHS to oversee the research use of the stored blood spots. One purpose of the BioTrust is to allow all groups of Michiganders to be part of research. Blood spots can only be used for studies to better understand diseases or improve the public's health. In most cases, researchers will be given a small punch from a blood spot and will not know whose blood spots were used. Information that can identify a person is not provided, unless that person is asked and consents. Personal results from research are not returned. For a list of studies using Michigan's blood spots and to learn more about the Biotrust click here.
Since of May 1, 2010, parents have been asked at the time of delivery if they wish to make their child’s dried blood spots available for health research through the BioTrust. Blood spots collected after this date are stored, but only used for research if written consent is granted. Blood spots collected before May 2010 can be used for research unless a parent or person (after age 18) contacts MDHHS. By completing the Directive to Destroy Residual Newborn Screening Blood Specimen form, parents or individuals can choose from one of the following options: destroy all remaining blood spots, destroy only the portion of blood spots stored for research use, or store but not use blood spots for research after newborn screening is complete.