The Newborn Screening Family Education Program: Learn. Connect. Advocate.
The Newborn Screening Family Education Program is dedicated to developing opportunities for all families to learn about newborn screening and to creating educational and training resources that build confidence in families to become leaders in the newborn screening system. In partnership with Family Voices and The National Center for Hearing Assessment and Management (NCHAM), and supported by the Health Resources and Services Administration of the U.S. Department of Health and Human Services under the Cooperative Agreement #UK5MC32105-02-00, The Newborn Screening Family Education Program provides tools that help families navigate newborn screening.
What is Newborn Screening?
Newborn screening is a state public health service that reaches the nearly 4 million babies born in the United States each year. It ensures that all babies are screened for certain serious conditions at birth, and for those babies with the conditions, it allows doctors to start care before more harmful effects happen.
Typically performed within 24-48 hours after a baby is born, and in most cases, while still in the hospital, newborn screening is made up of three parts including a blood test, hearing screen and heart screen.
Providing Families With the Information They Need to Navigate Newborn Screening
Newborn screening is an essential public health service that is important for families to understand. Although nearly all babies born in the United States every year receive newborn screening, only about two out of three people are aware of newborn screening, and only about one out of three people can correctly identify a definition of newborn screening.
To help families navigate their child’s health during a critical period of development, Expecting Health created a FREE online educational module called Navigate Newborn Screening.
In Navigate Newborn Screening, families will find answers to the following questions:
- What is the process of screening?
- What do newborn screening results mean?
- What conditions are screened in newborn screening?
- What should I ask my healthcare provider about newborn screening?
- What are the state and federal laws around screening?
Families will benefit from:
- Access to newborn screening educational modules
- Additional learning opportunities (i.e. attending conferences or meetings, access to other educational modules as they are developed)
- Opportunities to become leaders and advocates in the newborn screening system
A New Educational Module: Coronavirus (COVID-19): What Can You do?
To meet the needs of families during the current COVID-19 pandemic, we created a supplementary module, Coronavirus (COVID-19): What Can You Do?, to provide more information about newborn screening during the pandemic and steps families can take to stay healthy and informed.
This module will provide families with information about:
- Why newborn screening is an important service for babies even during a pandemic
- What to expect in newborn screening during the COVID-19 pandemic
- How to follow up on newborn screening safely
- Where to find resources for more information and updates
Download our resources:
- About Navigate Newborn Screening
- Why Do Families Need Navigate Newborn Screening?
- COVID-19 and Newborn Screening: Exploring Family-Centered Telehealth Experiences
Watch our webinars:
- Coming Together to Support Communities: Supporting Families During the COVID-19 Pandemic and Beyond
- Community Discussions on Telehealth and Newborn Screening During the COVID 19 Pandemic
- COVID-19 and Newborn Screening Series: From Emergency to Everyday: Provider Reflections on a Year of COVID-19 in Newborn Screening
- COVID-19 and Newborn Screening Series: From Emergency to Everyday: State Newborn Screening Program Reflections on a Year of COVID-19 in Newborn Screening
- COVID-19 and Newborn Screening Series: From Emergency to Everyday: Family Reflections on a Year of COVID-19 in Newborn Screening
- The Cohen's Journey Through an Out-of-Range Newborn Screening Result
- Newborn Screening is You: Connecting, Sharing, and Building with Families
Your thoughts matter:
Families are at the center of all we do, which is why we began the process building Navigate Newborn Screening by asking families what they wanted. But it doesn’t end there - family feedback drives the structure and content we add to Navigate Newborn Screening.
We want to continually improve this module. If there is a topic you would like to see covered in the module, let us know. If you have any suggestions, you can leave a comment within the module or reach out to us!
Partner with us:
Expecting Health partners with trusted, family-centered organizations, community leaders, and national agencies to develop and disseminate Navigate Newborn Screening. If you are interested in accessing our materials, partnering with us to share Navigate Newborn Screening, or have questions about the program, please contact Marianna Raia at [email protected].