5 things that nurses wish all parents knew about newborn screening

by Emily Drake, PhD, RN, FAAN

  1. Newborn screening saves lives.  In the first few days after birth, clinicians screen newborns for over 30 rare but serious diseases, most of which are easy to treat with diet changes or other treatment.  This screening, along with early intervention, can save babies from death or disability. Your baby’s pediatrician works with the state health department to ensure that this screening is done.  Many professional organizations including the Association of Women’s Health, Obstetric and Neonatal Nurses support newborn screening.

  1. Newborn screening is simple to do.  There are three things we generally do in the hospital before your baby goes home as part of the newborn screening – a hearing test, congenital heart defect screening (pulse oximetry), and blood sample collection on a special blood spot card. Your baby will probably sleep through the hearing test and the pulse oximetry test; however they may not like the tiny prick on their heel for the blood sample. Ask if you can What Parents Need to Know About Newborn Screeninghold your baby during the blood sample collection so he’s less likely to cry. To learn more about how these tests are done you can watch this video from the March of Dimes.
  1. Newborn screening has to get done on time.  We need to get these screening tests done within the first two days of life, and then the results need to be reported to your pediatrician a few days after.  Please give us a working phone number and address in case we need to contact you about the results of these tests after you’ve left the hospital. In some cases, delays can be deadly and hospitals are working hard to speed results to you.
  1. Remain calm.  Most screens come back negative, meaning your baby doesn’t have the condition we’re screening for, but a few come back positive and that means that we need to do more testing.  Even if the initial screening test is positive, further follow-up testing may all be negative, or normal.   And if your baby does have the condition, there are treatments.  Listen to this mom’s inspiring story about her son who was saved by newborn screening (“Growing up with Galactosemia”)
  1. Everybody’s doing it!  Newborn Screening is part of routine care for all newborns across the U.S. And we’ve been doing it since the 1960’s! It’s also part of routine care in many other countries. Newborn screening is expanding all the time. To check what screening is currently done in your state check the National Newborn Screening State reportSurveys suggest that most parents are in favor of even more newborn screening.

We want your baby to get off to a good start!  Let’s all work together to make sure your baby’s first tests (newborn screening) get done and that the results get reported to you quickly. Just ask your prenatal provider, pediatrician or nurse if you have any questions – we’re all here to help you make the best healthcare decisions for your baby.

Emily DrakeEmily Drake is currently an Associate Professor at the University of Virginia. She focuses her teaching, practice, and research on issues of Maternal-Child Health. She currently serves as a member of the Education and Training subcommittee for the U.S. Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC).

She is the author of over 20 book chapters and journal publications and has held leadership positions in the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN), Sigma Theta Tau Nursing Honor Society (STTI), and the March of Dimes.

More Information

Baby’s First Test

Save Babies Through Screening Foundation

Parents guide to Newborn Screening

Wikipedia on Newborn Screening

Newborn Screening Technical assistance and Evaluation (NewSTEPs)

Photo Credit: ChameleonsEye / Shutterstock.com

2 thoughts on “5 things that nurses wish all parents knew about newborn screening

  1. Mary Ann Lakeman says:

    we found out that our grandson had cystic fibrosis from his newborn screening. thank God for that because he started getting treatments early. EVERY baby should get these screenings at birth…..it’s vital to their health.

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