It is wonderful to report to you that Kentucky expanded its newborn screening to include all 29 disorders that the March of Dimes recommends for screening. Generally, Kentucky law requires all babies to undergo newborn screening before leaving the hospital after birth. Babies not born in a hospital or other health care institution must be tested between 24 and 48 hours after birth. Relevant laws are KRS 214.155 (Infants to be tested for inborn errors of metabolism) and KAR 4:030 (Newborn screening for inborn errors of metabolism and other inherited disorders).
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.
When is Newborn Screening Done?
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.
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. 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.
Special Considerations for Repeating the Newborn Screen
The newborn screen is considered 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.
More information concerning the above can be found on the Kentucky Cabinet for Health and Family Services website (link provided below).
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