A newborn screening is a mandatory screening for all of our Utah babies. Currently, the Utah Department of Health tests for over 40 different disorders. If these disorders aren’t caught and treated, then they can lead to health issues, brain damage, or possibly death.
Jade Elliott sat down with Kari Weiss from the Utah Department of Health, to discuss newborn screenings, what they test for and how they work.
What if my family’s health history is healthy? The disorders we screen for are called autosomal recessive and do not appear in every generation. Many times these disorders are the first in a family. That is why screening is so important.
When is it collected and by whom? Utah is a two screen state. The first screen is 24-48 hours after birth. This is either done in the hospital or with a midwife. The second one is 7-16 days after birth. The hospital or midwife will give you the 2nd card to take to your baby’s health care provider for collection at the 2 week checkup.
How much does it cost? The kit is $118. This fee funds 100% of our program. We do not receive any general State funds to operate the program. Typically this fee is rolled into the hospital’s laboratory fee. If you are having a home birth, you will need to work with your midwife to purchase a kit.
What if I can’t pay this? Call us and talk with us.
What does the cost cover? This covers all the testing (1st, 2nd and any necessary repeats), confirmatory (diagnostic) testing and follow-up.
How is the test done? Baby will have a simple heel prick where several drops of blood that are placed on the screening card (one drop in each circle).
How do I get my results? They are sent to the baby’s health care provider or midwife.
What if the results come back abnormal? We will contact your doctor’s office or midwife for further testing.
What happens to the card after? The dried blood spot is kept for a minimum of 90 days to ensure all testing is complete and nothing needs repeating. After this the sample may be used for quality assurance/quality control purposed that are related to newborn screening. Space is limited therefore we only have sample that are a few years old.
Can I request to have the blood sample destroyed? Yes, the left over specimen can be destroyed after 90 days and by completing a “Request for Destruction” form.
What if I want to refuse the test? In the interest of your baby’s health, Utah law requires newborn screening. An exception can only be made for a religious objection [Statute 26-10-6 (1)]. Visit the Objections section of our website for more information.
How is this tracked? Each baby is assigned a Kit number. This is like a medical record number. The first, second and any additional samples have the same kit number but a different accession numbers.
What do we do if the collection screen is unsatisfactory or untestable multiple times? We offer on-site training. Call us and we can schedule a time where we will come out and help with trainings.
What can I do as a parent? Ensure your baby’s card is filled out completely and accurately. We need to know the correct health care provider in order to send and communicate your baby’s results. Also, if we cannot reach the provider, we need to know how to contact you if we have urgent information to communicate. Also, make sure two screens have been completed at the right time.
What about adoption or foster care? Fill out the card with the person who will be taking care of baby. We need to know who the guardian is in case we need to contact them with medical instructions.
What if my baby was born out of state? Do not start a Utah screen, contact the state the baby was born in, request the result and inquire if additional follow-up is needed. Some states only have one screen while others, such as Utah, screen twice. If this is not possible, a Utah kit will need to be purchased.
Where can I get more information? newbornscreening.health.utah.gov
The Baby Your Baby program provides many resources for all pregnant women and new moms in Utah. There is also expert advice from the Utah Department of Health and Intermountain Healthcare that air each week on KUTV 2News.