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, ext. 3761
Toll Free: 800-462-6122, ext. 2
Fax: (502) 564-1510
Expanded Newborn Screening in Kentucky
Improved Newborn Screening Program Saving Lives (PDF 98k)
2005 Kentucky Newborn Screening Program News
Newborn Screening Up Since 2005
HIPAA Privacy Rule and Public Health
Kentucky has expanded its newborn screening to include all 29 disorders the the March of Dimes recommends for screening.
We are currently screening for 47 disorders and this number grows as does the technology.
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.
September Event: Fetal Alcohol Spectrum Disorders Awareness Week
Fetal Acohol Spectrum Disorders Awareness is an issue that matters to all of us. Kentucky has a brand-new documentary called “These Nine Months: The Realities of Alcohol and Pregnancy” that features Kentucky researchers, physicians, moms and families sharing their experiences with this subject. The video can be watched online.
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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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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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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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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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Sickle Cell Trait |
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So you have received the results of your baby’s newborn screening and have been told your baby has sickle cell trait. What does this mean?
People with sickle cell trait do not have sickle cell disease. Sickle cell trait is inherited from parents - just like eye color and hair color. Your baby got one normal blood gene protein, hemoglobin A, from one parent and the sickle cell blood gene protein, hemoglobin S, from the other parent.
Sickle cell trait usually does not cause any problems, it cannot be spread to others like a cold can and it will not change to sickle cell disease later on in life. Usually, the trait will not even affect your baby’s health - but you should always let any health care providers for your child know he or she tested positive for sickle cell trait.
Your baby’s doctor may want another blood test to confirm the initial test results. Your doctor can provide information about sickle cell trait when your child grows up. Teens and adults may be tested mainly to see if they could pass the sickle cell trait to their own children. It is possible (a 1-in-4 chance) for someone with the trait and his or her partner who also has the trait, to have a baby with sickle cell disease.
Lots of people of color have sickle cell trait. It is common in people of African, Mediterranean, Middle Eastern and Indian origins. It is not only blacks who have sickle cell conditions.
Hemoglobin is a special protein found in the red blood cells of all people that gives blood its red color and carries oxygen throughout the body. More than 500 different types or variants of hemoglobin are known. Babies in Kentucky are tested right after birth for sickle cell disease. Red blood cells of people with the disease become hard and pointed instead of soft and round like normal red blood cells. Sickle cell disease can be very painful and causes other problems.
For more information, contact the Pediatric Hematology Clinics at the University of Louisville or University of Kentucky.
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Ky Metabolic Foods and Formulas |
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These are the forms needed to file a claim. For Metabolic items for patients with PKU and other disorders requiring Metabolic foods or formula.
To be filled out by the patient:
KY Metabolic Foods & Formula Provision Financial and Release of Information Form
To be filled out by the Metabolic Specialist:
Authorization for Services
Certificate of Medical Necessity for Metabolic Foods & Formula
Prescription for Metabolics
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