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Kentucky Newborn Screening Program

family with baby

Kentucky Newborn Screening Program
275 E. Main St. HS2W-C
Frankfort, KY 40621

 

 

 

Phone: (502) 564-3756, ext. 4367
Fax: (502) 564-1510
Toll Free: (800) 462-6122, ext. 2

For lab results, please contact the state lab at:  502-782-7732 or 502-782-7711
Lab Fax: 502-564-2905

For KYCHILD  entry/password assistance, please contact the help desk at:  877-545-6175

What is Newborn Screening?

newborn baby foot being pricked for newborn screening test

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 inborn errors of metabolism or genetic disorders 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.

Your newborn should be screened by 24 hours of life or prior to leaving the hospital. The screening process involves a heel prick to collect a few drops of blood on special paper that is sent to Kentucky's Division of  Lab Services. This screening is safe and could help detect serious diseases quickly and lead to more positive outcomes for your baby.

Watch Save Babies One Foot at a Time video for more information on the heel stick for the newborn screening. Provided by Save Babies through Screening Foundation.

How can parents and guardians help?

First, make sure your infant has a blood specimen drawn before he or she leaves the hospital. To make sure your doctor can quickly communicate any lab results, please make sure your doctor has accurate, current contact information to include:

  • Parent name, address and telephone number
  • Emergency name and telephone number (should be a different telephone number than parents)
  • 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, doctor, or health department conducts the screenings.
  • If you have questions about newborn screening and your infant's health, contact your infant's doctor, your local health department, your midwife or other health care provider or the Department for Public Health Newborn Screening Program.

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.

HIPAA Privacy Rule and Public Health                  

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Critical Congenital Heart Disease

What is Critical Congenital Heart Disease Screening?

Critical congenital heart diseases (CCHD) are the most common of all birth defects. These can affect one of every 100 babies born in the U.S. each year. About half of babies born with CCHD are diagnosed after birth, when a seemingly healthy baby has life-threatening problems and requires emergency care.

What can be done to find CCHD before babies have trouble?

Kentucky is now doing a simple test before the baby is sent home from the hospital after birth. This is called Pulse Oximetry Testing

What is Pulse Oximetry Testing?

Pulse oximetry measures the oxygen level of the baby’s blood. Pulse Oximetry Testing is performed by putting a sensor on the baby’s foot and hand to read the oxygen percentage in the baby’s blood. This is not painful to the baby and only takes minutes to perform.

What happens if the Pulse Oximetry testing is not normal?

If this test is not normal, hospital staff will call the baby’s doctor to discuss the results. Additional tests and seeing a specialist may be needed.

What are the advantages to Newborn Screening for CCHD?

By doing this simple test, potential life-threatening heart defects can be identified early in a seemingly healthy newborn baby. It is important to find these defects immediately so that treatment can begin early.

CCHD Collection form KY CHILD - pdf 155k

Pulse Ox Screening Flowchart - pdf 72k

Pulse Ox for CCHD - pdf 2140k

Newborn Screening Results

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.

Why would a parent receive a letter from the Kentucky Newborn Screening Program?

Occasionally, a baby may need additional lab work completed. When this is needed, the Newborn Screening Program will send a letter to the parent and the doctor.  The repeat screening test is performed at no charge by the baby's current doctor or local health department.

Sometimes, the Newborn Screening Program does not receive a copy of your baby's repeated results. This usually happens when a baby has a different doctor than the one who did the initial screening at the hospital. 

If you get a letter asking you to repeat your baby's newborn screening test:

  • Contact your baby's doctor.
  • Explain to your doctor, you have received a letter to have a repeat newborn screening for your child and ask for a screening appointment as soon as possible.
  • Take the letter from the Newborn Screening Program with you and give it to the doctor. This way the doctor will know what is needed and how to send the results to us.

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Special Considerations for Repeating the Newborn Screen

baby in neonatal unit

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

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.

Kentucky Newborn Screening Brochure - (pdf-1037k)

Kentucky Newborn Screening Brochure - Spanish version - pdf 1043K

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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Health Care Provider Fact Sheets

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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Sickle Cell Trait

You 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 and hair color. Your baby received 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  will not change to sickle cell disease later on in life. Usually, the trait will not affect your baby’s health.  However, you should always let any health care providers know your child tested positive for sickle cell trait.

Your baby’s doctor may want another blood test to confirm the initial test results.  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. Testing is done mainly to see if your child could pass the sickle cell trait to their own children. 

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.  Sickle cell disease (not trait) can be very painful and cause 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

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 and 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 and Formula

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Last Updated 7/20/2017