What is Newborn Screening?

Newborn Screening is a public health program administered under Utah Statute 26-10-6 and Rule R438-15 that aims to give all babies born in Utah the best chance at lifelong health. Newborn screening began in the 1960’s after early treatment of a baby with PKU (phenylketonuria) allowed the child to develop without the typical intellectual disabilities experienced by other children with PKU. Since the development of this first test, dozens of additional disorders have been shown to have treatments that minimize or completely prevent disabilities and in some cases even prevent death, if started early in life.

Infants born in Utah have blood collected twice- once at 24-48 hours after birth, and again at the two week child care appointment, preferably between 7-16 days after birth.

Completing both tests is critical to correctly identifying these treatable disorders. Blood is obtained by a small heel prick. The blood is collected on a screening card which is sent to the Utah Department of Health’s Public Health Laboratory.

Parents who choose a birthing location other than a hospital are responsible for purchasing a kit prior to the child’s birth, and correctly collecting and submitting both samples.

We want to screen for any disorder that can be detected at birth and has a treatment because Utah babies deserve the best start in life.

Kim Hart, MS, LCGC

Disorders

What will be tested?

Utah has one of the most progressive newborn screening programs. Utah regularly adds disorders that meet state requirements, such as, the disorder must have an available screening method, successful treatment options, and a necessity for early diagnosis for successful treatment. Every year, approximately 1 out of every 300 infants screened will have the chance to live a healthy and independent life because of early diagnosis through our newborn screening program.

In 1965, Utah began screening for one disorder – PKU. Currently Utah screens for over 40 disorders. Blood sample cards are sent to the Utah Public Health Laboratory for testing. All newborns are also required to receive Critical Congenital Heart Disease (CCHD) testing and Early Hearing Detection and Intervention (EHDI) while in the hospital.

Objections

Most disorders screened for are recessive, meaning that parents are unaware of the potential for disability or death, until they receive the results from newborn screening. Without newborn screening, a diagnosis is often not made until it is too late. For this reason, the state of Utah mandates that all infants receive newborn screening at birth. The law provides for one exception in which “parents object on the grounds that they are members of a specified, well-recognized religious organization whose teachings are contrary to the tests required by this section.” In this case, the parent is required to complete and submit the Religious Objection to Newborn Screening Form.