|For More Information||Genetics Advisory Committee|
All infants born in Tennessee must have a newborn screening specimen submitted to the Tennessee State Laboratory to be screened for certain genetic conditions. If tests are abnormal, the Department of Health follows up with the baby’s doctor to initiate retesting, confirmation and treatment from a specialist if necessary. Early diagnosis and treatment can make the difference between a child leading a relatively normal life or having more significant developmental delays; long-term health care needs, or even death. This is a screening test that can be affected by baby's age, medical or treatment status at the time of specimen collection; the quality and quantity of the specimen or other variables and may not detect all affected infants. The possibility of false negative or false positive results must always be considered when screening newborns for metabolic disorders.
All infants born in Tennessee should have the newborn screening filter paper collected prior to leaving the hospital. Tests may need to be repeated for a number of reasons including being improperly collected, the infant received a blood transfusion, the specimen was collected when the baby was less than 24 hours of age or a possible disorder is indicated. Parents can contact the baby’s doctor or the local health department to schedule follow-up testing. Tennessee has a comprehensive genetics program that provides access to genetic screening, diagnostic testing, and counseling services for individuals and families who have, or are at risk for, genetic disorders.
Most newborns are born healthy and normal. However, there are some health problems that may not be detected on a routine exam by your baby's physician. This is why blood tests are used to screen newborns for these problems. A filter paper blood spot sample is required by state law to be submitted to the Tennessee State Laboratory for every baby born in Tennessee. A newborn baby may look perfectly healthy, but still have an inherited disease. To prevent the effects of disease, the sample should be drawn during the infant's first two to three days of life.
How and Where Your Baby is Tested?
Before your baby leaves the hospital nursery, his or her heel will be pricked and a few drops of blood will be collected. This blood specimen will be sent to the State Laboratory in Nashville for testing. The hospital will also provide you with a Parent Pamphlet giving you more details about newborn screening.
What Happens to the Extra Blood after the Test?
The extra blood is stored at the Department of Health Laboratory for one year. It is stored in case the blood is requested by you or the baby’s doctor in the future. The lab also uses it to do quality checks, to make sure the machines are working right or to evaluate new tests to help more babies in the future. Stored blood used for these reasons will have name, address and other information removed so the sample cannot be traced back to your baby.
What is the Parents' Role?
After you get home from the hospital, you may be contacted by your baby's doctor or the local health department to bring your baby in for a repeat blood sample. It is important that you follow-up quickly. If you have any concerns about the results of the screening tests, please contact your baby's health care provider.
Disease Descriptions for Parents:
Primary Care Provider:
It is the providers’ responsibility to make sure the newborn has had a screen, reviewed and interpreted results with respect to blood transfusion and diet status. Also providers should inform parents of results. If a specimen is unsatisfactory or abnormal it is the responsibility of parents and providers to obtain a repeat specimen once notified. The screening results will be mailed to the submitter of the specimen and to the provider listed on the newborn screening form.
If results are unsatisfactory (poor collection) both the provider and parents will receive a letter from the newborn screening follow up program requesting a repeat specimen to be submitted. If the results are abnormal and show a possible disease, follow up notifies the provider and tertiary center by phone and fax. Appropriate recommendations are made based on the result. Once notified please contact the parent as soon as possible to help facilitate rescreening. The follow up program along with the tertiary center ensures patient has confirmatory testing, diagnosis and treatment when necessary. An abnormal case is followed closely until the case is closed with confirmed diagnosis or is shown to be normal.
This is a screening test that can be affected by baby's age, medical or treatment status at the time of specimen collection; the quality and quantity of the specimen or other variables and may not detect all affected babies. The possibility of false negative or false positive results must always be considered when screening newborns for metabolic disorders. Regardless of the results of the newborn screen, the child’s health care provider should proceed with diagnostic testing on any infant exhibiting clinical signs and symptoms.
Tennessee Newborn Screening’s Secure Remote Viewer (SRV):
The Newborn Screening Program now has screening results available for healthcare providers to view and print via the web. SRV is a web based application which will allow you to view digital copies of the patient result reports. This will take the place of the current Voice Response System (VRS) that providers call to get results using their physician license number. Healthcare providers must be registered with the Department of Health in order to gain access to the SRV.
If you would like access to the system please fill out the SRV Access Form (PH-3909) and FAX it to (615) 532- 8555. An email address is required. Once this form is received, you will be notified via email of your Username and Password. The email will not include the link to the SRV website for security purposes. Please log into the State of Tennessee Newborn Screening Program Results Website to access the SRV once you receive your Username and Password.
What is the blood spot storage policy?
Please see Tennessee Laboratory Services for the official Newborn Screening Specimen Use, Retention and Disposal Policy.
Disease Descriptions for Providers:
Hospitals and Birthing Facilities:
By law, all infants born in Tennessee must have a newborn screening submitted to the Tennessee State Laboratory. It is the hospitals responsibility to fill out the collection form completely and accurately and to submit a satisfactory newborn screen on all infants prior to discharge regardless of age. Rules and regulations state that it is the responsibility of the hospital to distribute “Your Baby and Newborn Screening”, an educational pamphlet to all parents of a newborn.
Always collect a newborn screening before any transfusion even if the infant is <24 hours old. Collect a repeat filter paper 4 days past transfusion. If the hospital is transferring a newborn to another facility they must collect a newborn screen prior to transfer.
This is important! In the event a specimen needs to be repeated, the newborn screening program will continue to send letters to the mother until the specimen is received. In this case, the program does NOT want to notify the parent and inflict further heartache.
Newborn Screening Pamphlet Request Form
Critical Congenital Heart Disease (CCHD) Screening Materials:
A Self-Instructional CD-ROM for Practitioners:
This video course, "Let's Do it Right the First Time" for practitioners presents information about the disorders, techniques needed to properly collect blood specimens that are acceptable for the laboratory screening process and newborn screening information. For ordering information, email firstname.lastname@example.org or call 240-485-2708 (9:00-5:00 Eastern).
Newborn Screening Follow up Program
Phone: (615) 532-8462 or Toll Free: (855) 202-1357
Fax: (615) 532-8555
Satellite Genetic Centers
Cystic Fibrosis Centers
Pediatric Cardiology Centers
For direct MCH Contact:
Updated September 2013