Kentucky's Newborn Screening Program
Kentucky Newborn Screening Program 275 E. Main St. HS2W-C Frankfort, KY 40621 Phone: (502) 564-3756 x 3761 Toll Free: 800-462-6122 x 3 Fax: (502) 564-1510
Expanded Newborn Screening in Kentucky
Current News
Improved Newborn Screening Program Saving Lives (PDF 98k)
Newborn Screening Up Since 2005
Kentucky has expanded its newborn screening to include all 29 disorders recommended by the March of Dimes as of Jan. 1, 2006
What is Newborn Screening?
Kentucky's Newborn Screening Program helps parents find out if a baby has certain health problems. A newborn can look healthy, but have a number of serious diseases that cannot be detected without specific screening. If left undetected and untreated, these diseases can lead to slow growth, blindness, brain damage or possible death.
Early treatment can help prevent these serious problems.
How can parents and guardians help?
First, make sure your infant has a blood specimen drawn before he or she leaves the hospital. Make sure your doctor has accurate contact information including names and addresses to ensure laboratory results can be communicated as quickly as possible.
Act quickly if your doctor contacts you about repeat tests or the need for a medical evaluation. If your infant was born at home, make sure your midwife, physician or health department conducts the screenings. If you have questions about newborn screening and your infant's health, contact your infant’s physician, your local health department, your midwife or other health care provider or the Department for Public Health Newborn Screening program.
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When is Newborn Screening Done? |
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Your newborn will be screened before leaving the hospital. The screening process involves a painless heel prick to collect a few drops of blood on special paper that is sent to the state laboratory for analysis. Screening is safe and can reveal serious health conditions in your newborn before symptoms or serious effects occur.
How will I get the results?
Your baby's doctor will receive a screening report and notify you of the results. You have the right and are encouraged to ask your doctor or nurse to explain the screening process and provide the results to you.
Below you will find a section titled Parent Information with links to pages with information on each of the diseases we test for in the screening process and Parent Brochures.
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Newborn Screening Results |
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An abnormal test means your baby may have one of the health problems tested for in this screening. A negative test means that your baby probably does not have any of these problems. Because this test is a screening and not a diagnostic test, there is a small chance of a false negative or false positive result. Your baby's doctor may want to repeat the test or do other testing to further verify screening results. 
If your child's newborn screen is positive, your doctor will talk with you about the next steps to take. You may be referred to a specialist for more testing and genetic counseling. If your baby is then diagnosed with a disease, treatment will begin to prevent or minimize health repercussions.
If for some reason the Newborn Screening Program does not receive notification of your baby's repeated results. (Which is usually due to the baby having a different primary care physician at present than the one who did the initial screening at the hospital.) In this case the parent will receive a parent letter from the Newborn Screening Program office, letting them know their baby needs the Repeat Newborn Screening test done. The repeat screening test is done at no charge to the parent, by the baby's current primary care physician or local health department.
If you get this parent letter asking you to repeat your baby's Newborn Screening test. First, you need to call your baby's primary care physician. Explain to them you have received this letter and you would like to get your baby an appointment, to have this screening repeated as soon as you can. When you go to the physician you need to make sure to take our letter with you and give it to the physician. This way the physician will know what we need and they will have our fax number to send the results to us.
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Parent Information |
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Parent Brochures
These brochures can be printed out on legal paper for use by health care providers and parents.
Note: These documents are in Adobe Acrobat (.PDF) format. Please click on the following link to download a free copy of Adobe Acrobat Reader.
Parent Brochure for the KY Newborn Screening Program (English) (PDF - 429k)
Parent Brochure for the KY Newborn Screening Program (Spanish) (PDF - 467k)
Parent Fact Sheets
These Parent Fact Sheets are designed to help answer questions parents may have regarding a disease they suspect or know their child has. Simply click on the disease name of which you would like more information and it will open the Parent Fact Sheet in a new window.
Note: These documents are in Adobe Acrobat (.PDF) format. Please click on the following link to download a free copy of Adobe Acrobat Reader.
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Special Considerations for Repeating the Newborn Screen |
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The newborn screen is most accurate when baby's blood is taken 24 hours or later after birth. If your baby's blood was taken sooner than 24 hours after birth, a second sample will be taken.
However, if your baby was born prematurely or needed special care after birth such as blood transfusion or antibiotics, the timing of repeat testing may be different.
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Health Care Provider Fact Sheets |
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These Health Care Provider Fact Sheets are designed to give information on each of the diseases we test for in our Newborn Screening Program. Simply click on the disease name of which you would like more information and it will open the Health Care Provider Fact Sheet in a new window.
Note: These documents are in Adobe Acrobat (.PDF) format. Please click on the following link to download a free copy of Adobe Acrobat Reader.
We are providing a link to our Newborn Screening Guide below for Health Care Provider and Clinic office's to use below. We hope this will be a useful tool for our Health Care Providers.

Kentucky Newborn Screening Guide for Health Care Providers (PDF - 1508K)
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