What Conditions are Screened For in Rhode Island?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Rhode Island
Newborn screening is a state health program that seeks to detect certain conditions at birth in order to make sure your child has a healthy, happy start to life. Blood tests on newborns in the hospital check for metabolic (how the body digests food), endocrine (how the body controls many functions), and hemoglobin (blood) conditions.
The infant’s heel is pricked so that a few drops of blood can be caught on a special card that goes to a lab to be tested. Sometimes a test needs to be repeated if the first result was abnormal. This does not necessarily mean that a baby has a condition. If a baby's test needs to be repeated, a doctor or nurse will call and let the parent know. The repeat test should be done as soon as possible. It is best to have the repeat test done at the hospital where the baby was born, but a parent can go to the lab at any maternity hospital in Rhode Island.
Results from these tests are reported to the baby's doctor. Tests are available for many conditions beyond those included in Rhode Island's Newborn Screening Program. These additional tests are available for a fee through other labs. If a parent would like to have their baby receive additional testing, they should talk to the baby’s doctor.
How is Newborn Screening Paid for in Rhode Island?
The newborn screening fee is $124.43 for bloodspot screening and $42.33 for hearing screenign per newborn. The fee is paid by the hospital or health care facility to the Health Department where the birth occurred in the absence of a third party payer such as a private health insurer.
Policies and Resources
All newborns must participate in newborn screening unless parents object on religious grounds.
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 costs. Fortunately, Rhode Island 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.
If your child has private health insurance, accident and sickness insurers, nonprofit hospital and medical service corporations and HMOs must cover the medically necessary enteral formula and low protein food products. Normal copayment or deductibles may apply just as they do for other types of prescriptions on your plan.
If your child does not have private insurance, public assistance will pay for enteral nutrition products for eligible neonates, infants, children and adults up to $2,500 per year. The health department creates rules and regulations pertaining to metabolic conditions, including treatment services as indicated by accepted medical practice.
Addition to providing laws and programs to make sure your child has access to the formulas they need to manage their condition, Rhode Island’s First Connections Home Visiting Programs provides families with early linkages to available services to prevent or mitigate poor health and /or developmental outcomes. Families are identified to participate in the program through universal screening and community referrals.
The First Connections Home Visiting Program works in conjunction with the state's newborn metabolic and hearing screening program, which identifies babies with urgent medical conditions, and provides services to bring these children into care. Home visitors also serve as the community based follow-up for Newborn Developmental Screening, Early Intervention, the Healthy Housing Program, the Immunization Program, Child Protective Services, and pediatricians. The First Connections team provides the following core services: a comprehensive assessment of mothers, infants and their families; brief intervention including health education and connections with appropriate health care and human services and resources as indicated by the assessment and family choice. For more information, contact Kristine Compagna, the manager of the Newborn Screening and Early Childhood Program, at Kristine.Campagna@health.ri.gov.
Storage and Use of Dried Blood Spots:
Blood spot retention time is 23 years. Rhode Island is currently reviewing the policy on storage and use of dried blood spots. Further information will be posted as it becomes available.