What Conditions are Screened For in Georgia?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Carnitine Uptake Defect (CUD)
Organic Acid Conditions
About Newborn Screening in Georgia
The Georgia Newborn Screening Program is committed to protecting and improving the health of all infants by assuring all newborns receive appropriate screening, follow-up, and medical services. The Newborn Screening Program screens for disorders detectable at birth, including metabolic disorders, hemoglobin disorders, immunodeficiencies, endocrine conditions, hearing loss, and critical congenital heart disease (CCHD). The test begins with a blood specimen taken from every newborn before leaving the hospital. Each baby’s heel is pricked and a few drops of blood are collected on a filter paper card. Then the card is sent to a laboratory for testing. The screenings for hearing loss and CCHD are non-invasive and performed by the hospital or birthing center before a newborn is discharged.
Within a week or two, these results are shared with the hospital of birth and the doctor listed on the screening card. If your child’s newborn screen comes back abnormal, your doctor will contact you to discuss the next steps. Since the impact of these conditions can be decreased as soon as treatment begins, it is very important that your doctor has a current phone number and address so they can reach you. If they do reach out, follow their instructions immediately.
How is Newborn Screening Paid for in Georgia?
The Department of Public Health charges parents a $80.40 screening fee. Screening services will not be denied to any Georgia newborn based on inability to pay.
Policies and Resources
All newborns must participate in the program unless the 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, Georgia law allows the Department of Public Health to use state and or federal funds, including the Maternal Child Health block grant, to provide services for children who suffer from the conditions detected through newborn screening. Children’s Medical Services, Babies Can’t Wait, and Children 1st are all programs designed to help support families who have a child with a genetic condition or birth defect.
Children’s Medical Services (CMS) provides care coordination and other needed medical/health care services for children and youth who have eligible chronic medical conditions. CMS is a Georgia Department of Public Health (DPH) program that promotes improved health and wellness outcomes for children and youth, birth to 21 years of age, with special health care needs.
The CMS program is designed to:
- Provide services that help to prevent complications due to untreated condition(s)
- Offer care and support for improved health and wellness for children and youth with special health care needs from birth to 21 years of age
- Provide early and continuous screening for children with special health care needs
- Connect children and youth to a medical home and adequate health insurance
- Help families manage their appointments and follow up treatments with health care providers and vendors
- Organize community resources for families to find easily
- Support adolescents moving from pediatric to adult health care
WHO IS ELIGIBLE FOR THE CMS PROGRAM?
Children and youth, birth to 21 years of age, who
- Have an eligible chronic medical condition such as asthma, cystic fibrosis, spina bifida and sickle cell
- Live in Georgia
- Household income at or below 247% of the Federal Poverty Guideline
WHAT SERVICES MAY THE PROGRAM BE ABLE TO ASSIST WITH?
CMS serves as the payor of last resort for the following direct services:
- Comprehensive physical evaluations
- Durable medical equipment
- Medications and supplies
- Diagnostic testing
- Genetic counseling
- Inpatient/outpatient hospitalization
WHERE ARE SERVICES LOCATED?
CMS services are offered statewide in 18 community-based offices. To find your local CMS office search the Maternal and Child Health (MCH) Locator on the CMS website: https://sendss.state.ga.us/sendss/!mch.coord_search
Babies Can't Wait (BCW) is Georgia's statewide, interagency service delivery system for infants and toddlers with developmental delays or disabilities and their families. BCW is established by Part C of the Individuals with Disabilities Education Act (IDEA), which guarantees all eligible children, regardless of their disability, access to services that will enhance their development.
Babies Can’t Wait has a directory that provides information about the BCW Program located nearest to the child and family. To access the directory, call 1-800-229-2038 or (770) 451-5484 in Atlanta. The State BCW Office number is toll free: 1-888-651-8224. You may also visit the Children and Youth with Special Needs Coordinator Contact List for information on how to reach local Babies Can't Wait Programs.
Children 1st is the “Single Point of Entry” for all of the Georgia Department of Public Health (DPH) child health programs, including Babies Can’t Wait, Children’s Medical Services, Early Hearing Detection and Intervention and 1st Care. Children 1st links children birth to five years of age, to early intervention services, children with special needs programs, community resources, and other DPH programs to meet the developmental and resource needs of the child and their family to ensure optimal health and development of the child. Children 1st is available in each of DPH’s 18 public health districts and 159 counties. Participation is voluntary and there are no financial requirements for enrollment into the program. To find your local Children 1st office search the Maternal and Child Health (MCH) Locator on the DPH website: https://sendss.state.ga.us/sendss/!mch.coord_search. For more information on Children 1st, please visit https://dph.georgia.gov/children1st.
Storage and Use of Dried Blood Spots:
All Dried Blood Spots are retained by the Georgia Public Health Laboratory (GPHL) for twelve (12) weeks after testing is completed in order to allow for reanalysis if questions arise concerning the test results. Specimens that are presumptive positive for any of the diseases included in the newborn screening panel are stored for laboratory quality assurance purposes for up to two years.
The GPHL is a secure facility. Access to newborn screening specimens is restricted to GPHL staff involved with specimen receipt, testing, data entry, and laboratory management.
Use of Specimens
Retained Dried Blood Spots and associated demographic information can be used for the following purposes:
* Re-analysis to confirm the original test results.
* Internal method development and method validation studies, including the setting of appropriate cutoffs or normal ranges.
* Quality assurance audits and gap analysis.
* De-identified Dried Blood Spot portions may be sent to another laboratory when the reason for sending the portion is:
- Confirmation of an unusual newborn screening result;
- Participation in a specimen-exchange program designed to improve the quality of testing in newborn screening laboratories; or
- Providing assistance to another laboratory in developing or validating a newborn screening method (requires a statement from the laboratory requesting the specimens that specifies how the specimens will be used, and written approval from the GPHL Director).
Dried blood spots will be autoclaved and then handled as medical waste, which involves off-site incineration.
Release of Specimens
In addition to the applications described above under the Use of Specimens Dried Blood Spots, Dried Blood Spots may be transferred to other entities as delineated below:
- An entity that has a contract with DPH to perform additional (i.e., second tier) testing in response to an out-of-range screening result.
- A health care provider at the request of the patient, legal guardian, or legal representative after completing and signing a written request form approved by DPH.
- A researcher with written, informed consent from the patient, legal guardian, or legal representative as long as the research project has been reviewed and approved by DPH.
- A named person in a legally executed subpoena following review and approval by the attorney general or his/her designee.
- A person to whom release is mandated by order of a court of competent jurisdiction.
Any parent who desires to have his/her child’s newborn screening specimen (presumptive positive or confirmed case) destroyed twelve weeks after completion of testing may request such action in writing. Any parent who desires assurance that his/her child’s specimen has been destroyed after completion of testing may request confirmation of such action in writing.
Information on the retention and potential use of residual newborn screening specimens is available through the Department’s website.