Understanding The Arizona Newborn Screening Program

Newborn screenings distinguish health conditions that could possibly result in critical, long-term effects on newborns. Millions of babies in the U.S. are routinely screened, using a few drops of blood from the newborn’s heel, for certain genetic, endocrine, and metabolic disorders, and are also tested for hearing loss and critical congenital heart defects prior to discharge from a hospital or birthing center.[1]

This screening is highly recommended to help detect and treat any conditions that may have been overlooked. Newborn screening tests cost $36 per child for the first screen and $65 for the second screen.[2] Every year, about 100 babies in Arizona are found to have a serious condition identified through newborn screening.[2] The Arizona Newborn Screening program provides families with results that will help them predict the outcome of their newborns' health.

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Insight to Screenings

Nationwide, more than 13,000 newborn babies are identified each year with conditions such as cystic fibrosis, sickle cell disease, congenital heart defects, and hearing loss.[3] Newborn screenings are performed within the first few days of when a child is born. Arizona requires a newborn to be screened twice, as some conditions are easier to detect on a subsequent screen.[2] Once infants are identified by an abnormal result, they are referred to specialists for evaluation and treatment.[3]

Sonal Bhakta is the Office Chief of Newborn Screening at the Arizona State Laboratory, which oversees the Arizona Newborn Screening program. Arizona includes bloodspot screens for 29 rare and serious disorders and provides oversight for hearing and pulse oximetry screening, two point-of-care tests done at the hospital or birthing center, resulting in 31 tests total.[4] Newborn screening bloodspot specimens and attached information submitted to the Arizona Department of Health Services (ADHS) are the property of the ADHS.[4]

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Sonal Bhakta states, “Arizona is mandated to perform two screenings. The first screening is performed at a hospital 24 hours after birth or before discharge. Sometimes babies are born outside of the hospital, which leads to midwives collecting the first screening sample within three days of delivery. The second screening is collected after two weeks of discharge.” In Arizona, approximately 98% of all infants are screened for hearing loss prior to hospital discharge.[2] Bhakta says, “The samples are collected and tested, and the results can be given within 24 hours.” Specimens are stored at room temperature for 90 days and then made unidentifiable, through a process called autoclaving, and then are discarded.[2] Bhakta adds, “Once everything has been finalized, the results are released by mail and electronically. Hospitals and physicians can obtain the information as well.”

Potential Concerns of Parents 

Arizona law requires providers to order newborn screening for all newborns born in the state for these potentially fatal conditions.[2] Still, parents share different views on whether newborn screening would benefit their child. Oftentimes, parents choose to identify potentially treatable or manageable disorders. Some parents choose to opt out of the program. Bhakta states, “Most families have concerns about what happens during this process and what happens afterwards with the blood spot samples.” Once the parents receive additional information on the screening, they are given the opportunity to refuse services, in fear of their child being hurt or due to personal preference.

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Another concern of parents is being able to cover medical expenses if their child is positive for one of the conditions. Arizona Health Care Cost Containment System (AHCCCS), Arizona’s Medicaid program, provides medical coverage, including doctor's office visits, hospitalization, prescriptions, lab work, and behavioral health services to families.[2] The Office for Children with Special Health Care Needs (OCSHCN), a program of the Arizona Department of Health Services, was established to help families navigate the healthcare system and ensure children get necessary services.[2] Through programs such as these, more families are able to receive the help they deserve in the event that their child is diagnosed with a serious disorder.

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Importance of Newborn Screening Programs

Newborn screening programs do a remarkable job of detecting babies at risk of serious health conditions, promising a life-changing opportunity for babies who would otherwise face disability or death.[3] However, long-term surveillance is needed to ensure children identified through these screenings receive care throughout their lives.[3] It is vital to continue to monitor the results of newborn screening tests to ensure that newborns are receiving the quality of care that they need. Bhakta expresses that, “For many of these disorders, it is time sensitive that we have children tested at birth. Having the proper diagnostic is really important for the baby’s health.” Bhakta concludes that, “Early treatment does prevent and minimize serious symptoms during the early stages of a child’s life.” By providing newborn screenings, healthcare providers will be able to continue to effectively provide solutions, which will lead to long-term quality care for newborns who are in need.

Citations:

[1] Centers for Disease Control and Prevention (CDC). Newborn Screening Portal. Centers for Disease Control and Prevention. https://www.cdc.gov/newbornscreening/index.html. Published September 29, 2020.

[2] BabysFirstTest.org. States Arizona. Arizona | Baby's First Test | Newborn Screening | Baby Health. https://www.babysfirsttest.org/newborn-screening/states/arizona. Published 2020.

[3] Centers for Disease Control and Prevention (CDC). Fulfilling the promise - ensuring the success of newborn screening throughout life. Centers for Disease Control and Prevention. https://www.cdc.gov/parents/infants/newborn-screening-success.html. Published October 8, 2020.

[4] Arizona Department of Health Services (AZDHS). AZDHS: State Laboratory - Newborn Screening. Arizona Department of Health Services. https://azdhs.gov/preparedness/state-laboratory/newborn-screening/index.php#info-for-parents-disorder-info