As childbirth educators, we should be sharing information with families about the tests and assessments that newborns undergo in the first hours, days and weeks of their lives.  Rather than being viewed as more unnecessary interventions often delivered as part of maternal and neonatal care in 2020, these screenings are making a real difference in the lives of babies and families.  Newborn Screening is one of the most effective public health campaigns ever initiated. Through early detection, there has been a positive impact on infant health across diverse geographic, racial/ethnic and socioeconomic differences.

The purpose of these newborn screenings is to identify any infants with undiagnosed congenital disorders or confirm suspected health conditions.  Once identified, these babies can receive early interventions to address their specific issues.  Early intervention has been consistently shown to improve outcomes.  The typical assessments include a blood sample to identify genetic disorders, a simple congenital heart defect screening, and a hearing test.  Each state in the United States screens for a different number of genetic diseases.  The national Recommended Uniform Screening Panel advises testing for 35 different conditions (33 disorders, and then hearing loss and heart defects), but educators in each state or in other countries will need to check with their local, state or provincial governmental health agencies to determine exactly what is including in the newborn screens in their area.  These screenings are conducted regardless of birth location - hospital birth or community birth.

Recently, the first published report on the prevalence of newborn screening disorders was released by the US Centers for Disease Control (CDC). In the United States, 3,791,712 babies were screened and almost 13,000 newborns were identified as having a genetic disorder or condition.  Hearing loss is the most common disorder identified and from the blood samples collected, primary congenital hypothyroidism and cystic fibrosis were the most frequent conditions found.

There are some challenges and limitations in presenting this information as all the 50 states do not test for the same conditions and new screens are added for additional diseases throughout the reporting period.  Additionally, while most infants are screened twice in the first weeks through blood spot sampling, there are situations where an infant may be screened in two different states during that time period.

Educators can help families understand the importance of this early screening for their newborn, and the value of identifying concerns early on for treatment and support.  Each state has consumer facing educational material that childbirth educators can access and share with their students to provide further information.  Do you know where to find the newborn screening information for your location?  Consider investigating it now and having information handy for the next families who participate in your classes.  A great place to start is the Baby’s First Test website.

References

Sontag MK, Yusuf C, Grosse SD, et al. Infants with Congenital Disorders Identified Through Newborn Screening — United States, 2015–2017. MMWR Morb Mortal Wkly Rep 2020;69:1265–1268. DOI: http://dx.doi.org/10.15585/mmwr.mm6936a6.

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