What Conditions are Screened For in Vermont?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Vermont
The Vermont Department of Health's newborn screening program (VNBSP) assures that infants born in the state have the opportunity to be tested for certain conditions for which early identification and treatment can help prevent severe disability. VNBSP screens for most of the disorders listed on the Recommended Uniform Screening Panel (RUSP) and is in the process of adding others. In addition to conditions listed on the RUSP, there are other secondary disorders which are likely to be identified in the process of screening. For a current listing, contact the Program Chief at 802-951-5180.
Most tests use a few drops of blood from pricking the baby's heel. If the newborn screening test suggests a problem, the baby's doctor or other primary care provider will contact the family and will likely recommend further testing. It is very important to follow the physician’s instructions immediately. If the second tests confirm a condition, the doctor may refer the baby to a specialist for treatment. Following this treatment plan can save a baby from lifelong health and developmental problems. The Department of Health provides assistance to hospitals, health care providers, and parents in the implementation of the newborn screening program and assures that the program operates according to current standards of practice.
How is Newborn Screening Paid for in Vermont?
The newborn screening test is $125.00 per child. The Vermont Department of Health collects this fee from hospitals which obtain the specimens to finance the costs of performing the tests, assuring appropriate follow-up, and administering the program.
Policies and Resources
Screening tests are performed on all newborn infants. However, after being fully informed of the benefits of the tests and the potential risks of not identifying a serious disorder, the parents or legal guardians may refuse to have the tests performed. While this is highly discouraged, documentation of such refusal shall be sent to the Vermont Department of Health, Vermont Newborn Screening Program.
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. Fortunately, Vermont has many laws and programs which have been put in place to make treatment of these conditions more affordable for families.
If a child has private health insurance, an insurer must cover medically necessary medical foods and formula. Coverage of low protein modified food products is required for at least $2,500 annually.
The Office of Children with Special Health Needs (CSHN) provides a number of services to Vermont children with complex health needs from birth to age 21. Families are a child’s best caregivers, advocates and decision-makers. CSHN provides information, medical services, care coordination and resources to help families support their children’s well-being, growth, and development. With the family’s permission, CSHN coordinates its efforts with those of the children’s primary care physicians.
CSHN helps to support a Metabolic Clinic for children who are born with metabolic diseases such as phenylketonuria (PKU). Clinics are held in Burlington and Rutland. For more information, contact Vermont’s CSHN program.
Storage and Use of Dried Blood Spots:
After a newborn’s blood has been screened for the various conditions, there may remain some blood on the collection card. This is called the “residual dried bloodspot”. Vermont stores the residual dried bloodspots for one year. While in storage, they will not be used for any purposes unrelated to newborn screening, including research. Stored specimens will only be retrieved and retested for information that will help clarify a child’s medical condition. This is only done with parental permission. Parents may request that a specimen be destroyed after all testing is complete.