FAQs

Families

For deliveries at home or in a birth center, please order from our website at least 2 weeks prior to when you expect to need the kit. A newborn screening kit includes the 1st and 2nd newborn screening cards. The first screen is to be collected when the baby is 24-48 hours old. The second screen when the infant is about 2 weeks old. See our Practitioner's Manual for more instructions or visit our Birth Centers and Home Births page.

If your baby is born in a hospital, ask your nurse if the testing has been done. You will be given a second blood collection form before you go home. Take this form to your baby's first medical appointment. Your baby's medical provider will make sure the second screen is collected. If your baby is born at home or in a birth center, ask your midwife for help in getting the screening done. Make sure that both screens, the first and second, are done for your baby. For more information, visit our Birth Centers and Home Births page.

Your baby's health care provider will be called if the test is abnormal. An abnormal result does not mean that your baby has a disorder. Additional testing is necessary. For faster notification of an abnormal result you can help by:

Make sure your address and phone number are correct on the blood collection form and
Make sure your baby's correct health care provider is listed on the blood collection form.

Infants can be screened for all disorders up to 6 months of age. Reference ranges for the newborn screening tests have not been validated beyond the newborn period. For infants 6 months and older who have not had a newborn screen, we recommend proceeding directly to diagnostic testing if there are signs or symptoms of a disorder. The newborn screening medical consultants are available to assist with specific questions. See contact information below or please call 801-584-8256 for assistance. Cystic Fibrosis Clinic 801-213-3599 Endocrinology 801-213-3599 Hematology 801-662-4700 Metabolic Genetics 801-213-3599

A specimen is considered unsatisfactory if the specimen does not meet the lab requirements for testing. Common causes of unsatisfactory specimens are caked blood (more than one drop), blood that did not soak through the filter paper, not enough blood, specimen not properly dried, applying specimen with a capillary tube, alcohol not allowed to dry completely before collection, contaminated screening card, as well as other reasons.

In general, all of the disorders that are detected by newborn screening tests are those that cause problems with an infant’s physical and mental development. The screening tests detect metabolic, hormone, and blood disorders. Babies born with one of these disorders can appear healthy in the newborn period. Also, there may be no known family history of one of these disorders. Even though these disorders are rare, early diagnosis along with timely and appropriate treatment can make the difference between healthy development and life-threatening problems.

The term 'PKU test' is outdated as well as misleading since PKU is only one of many disorders on the newborn screening panel. PKU was the first condition screened for by newborn screening in the 1960s. Utah has been screening for more than PKU since the 1970s. Telling a parent their newborn has an abnormal PKU can be confusing for parents and providers. An initial reaction would be to look up PKU online, when in fact the screening result may be abnormal for a different disorder on the screening panel. Please call it the newborn screen, NBS, heelstick, or blood spot test.

Utah collects 2 screens for several reasons. First, at the time the second screen is collected, the infant is no longer protected by the mother's hormones. Because of this, infants may have a normal 1st screen, but then the 2nd screen is abnormal (e.g. Hypothyroid and Congenital Adrenal Hyperplasia). Additionally, some disorders are only identifiable on the first screen and the second screen is normal (e.g Very Long Chain Acyl CoA Dehydrogenase deficiency).

Your insurance company will most likely request the following information:

Your doctor’s NPI number
Newborn Screening Program tax ID
CPT codes for the Newborn Screening test

Your Doctor’s NPI Number:

Use this link to look up your doctor and find their NPI: https://npiregistry.cms.hhs.gov/search

Newborn Screening Program Tax ID:

Our tax ID number is 87-6000545.

CPT Codes for the Newborn Screening Test:

Screen/Test	Disorder	CPT
Newborn Screen	Newborn Screening Panel (includes test kit, postage, and the laboratory tests specified by the state for inclusion in this panel)	S3620
Tandem Mass Spectrometry	Amino Acid, Acylcarnintine, Urine Organic, Fatty Acid Oxidation, and Creatine Metabolism	83789
Biotinidase Enzyme	Biotinidase Deficiency	82261
Thyroxine (TSH)	Congenital Hypothyroidism	84437
17OHP	Congenital Adrenal Hyperplasia	83491
Immunoreactive trypsinogen (IRT)	Cystic Fibrosis	83516
Galactose-1-Phosphate Uridyltransferase (Gal-1-PUT)	Galactosemia	82776
Isoelectrophoresis (IEF)	Hemoglobinopathies	83020
HPLC	Hemoglobinopathies	83021
Multiplex PCR (TREC)	Severe Combined Immunodeficiencies	81479
Multiplex PCR (SMN1)	Spinal Muscular Atrophy	81329
LCMS	X-Linked Adrenoleukodystrophy	83789
LCMS	Pompe - Alpha-glucosidase Enzyme Analysis	82657
LCMS	MPS-I - Alpha-iduronidase Enzyme Analysis	82657