Kentucky's Newborn Screening Program
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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 2
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 the the March of Dimes recommends for screening.
What is Newborn Screening?
Kentucky's Newborn Screening Program helps parents find out if a baby has certain health problems. A healthy-looking newborn can have any 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, possibly, 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 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.
The Parent Information section below provides links to brochures and information on the diseases included in Kentucky's newborn screening.
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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.
Rarely, the Newborn Screening Program does not receive notification of your baby's repeated results. This usually happens when a baby has a different primary care physician than the one who did the initial screening at the hospital. In this case, parents will receive a letter from the Newborn Screening Program letting them know their baby needs the repeat newborn screening test. The repeat screening test is performed at no charge by the baby's current primary care physician or local health department.
If you get a letter asking you to repeat your baby's newborn screening test, first, contact your baby's primary care physician. Explain to him or her that you have received notification to have the repeat newborn screening for your child and ask for a screening appointment as soon as possible. When you go for the repeat screening, be sure to take the letter from the Newborn Screening Program with you and give it to the physician. This way the physician will know what is needed and how 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.
If you do not have Adobe Acrobat or other .pdf viewer, you can download the free Adobe Acrobat here.
Parent Brochure for the KY Newborn Screening Program (English) (PDF - 562k)
Parent Brochure for the KY Newborn Screening Program (Spanish) (PDF - 467k)
Parent Fact Sheets
These parent fact sheets can help answer questions parents may have regarding a disease they suspect or know their child has. Simply click on the disease name to open the parent fact sheet in a new window.
Note: These documents are in Adobe Acrobat (.PDF) format.
If you do not have Adobe Acrobat or other .pdf viewer, you can download the free Adobe Acrobat here.
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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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TRAIN Modules |
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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. Click on a disease name to open the health care provider fact sheet in a new window.
Note: These documents are in Adobe Acrobat (.PDF) format.
If you do not have Adobe Acrobat or other .pdf viewer, you can download the free Adobe Acrobat here.
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Kentucky Newborn Screening Guide |
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