What Conditions are Screened For in Maine?
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 Maine
All newborns must be tested for several rare but serious medical conditions. Babies with these conditions may look healthy at birth. If not treated, these conditions can cause health problems such as intellectual disability, slow growth, and even death. With treatment, these problems may be prevented.
A nurse or other medical professional will take a few drops of blood from your baby’s heel. This blood sample is sent to a newborn screening laboratory. The blood should be drawn after your baby is 24 hours old, but before your baby leaves the hospital. Your baby’s doctor will contact you if the results suggest that your baby may have one of these conditions. The doctor will talk with you about the results and what needs to be done next. Ask about the test results when you see your baby’s doctor. Sometimes, a baby needs to be tested again. This does not necessarily mean that your baby has a medical condition. Retesting may need to be done if:
- The blood sample was taken before your baby was 24 hours old
- There was a problem with the way the blood sample was taken
- The first test showed a possible medical condition
Your baby’s doctor or the Maine CDC Bloodspot Screening Program will contact you if your baby needs more testing. It is important to get this testing done right away.
How is Newborn Screening Paid for in Maine?
Birthing Hospitals are charged $110.00 per infant, and includes any necessary retesting. Hospitals bill insurance companies for all routine care, including newborn bloodspot screening. Any further financial concerns can be directed to the program coordinator.
Policies and Resources
Newborn screening requirements do not apply to a child if the parents of that child object to the screening on the grounds that it conflicts with their religious tenets and practices. The birthing attendant will provide the needed form to be completed after birth.
Support for families:
One of the concerns some families may have when they find out their child has a condition detected through the newborn screening program is the increase in health care cost. Luckily, the state of Maine has many laws and programs which have been put in place to make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.
Most families have never had exposure to the various health services provided by the state of Maine before having a loved one with a condition detected through newborn screening. For assistance in navigating what can be a complicated system, the Partners in Care Coordination Program (PCC) provides health, community information and referral information to families of children and youth from birth to 21 years of age. They can help your family make sure they are fully utilizing all services available for their loved one. For more information, contact Lisa Brown at (207)287-5349 or via email at firstname.lastname@example.org.
If your child is covered by an individual and group nonprofit medical services plan, a nonprofit health care plan, an individual and group health insurance or a HMO, their insurer must reimburse for metabolic formula and modified low protein food products. The $3,000 annual cap applies to food products.
Storage and Use of Dried Blood Spots:
After the blood sample has been tested, it is kept within our program until further notice to make sure it can be used to benefit your child in the future. The samples that show a positive result are sometimes used to help our program make sure that we find all of these rare, serious disorders in all infants tested. The samples are kept in a secure freezer, and only removed for further testing at the request of the parent, your baby’s doctor and our program. Specimens can be destroyed at the parent’s request.
If your baby does have one of these disorders, the program will make sure your baby’s doctor knows where your baby can get specialty medical treatment if needed. You may be contacted by Children’s Developmental Services (CDS) to offer to check your baby for developmental delays or learning problems. Also, some of the information gathered at your baby’s doctor’s office will be shared with us to help us make sure that your baby is getting the best care possible.