Critical Congenital Heart Disease (CCHD) Resources to Provide Parents

Date: June 2013

These resources have been developed by many programs around the nation and are intended for use by newborn screening (NBS) programs to use as educational tools for Critical Congenital Heart Disease (CCHD).

• Baby’s First Test is dedicated to educating parents, family members, health professionals, industry representatives and other members of the public about the newborn screening system. Please visit Baby’s First Test for up to date educational resources for CCHD.
• The Children’s National Medical Center has resources for parents and families that explain CCHD and newborn screening using pulse oximetry testing.
• Heart Smart Video: Baby's First Test and Children's National Medical Center present the Heart Smart video series, educating health care providers and families on screening for critical congenital heart disease. Available in 6 languages: English, Spanish, Arabic, French, Russian and Chinese
• Fact sheets for parents produced by the Utah Department of Health* in both English and Spanish.
The Michigan Department of Community Health (MDCH)* is implementing a demonstration program to assess the feasibility of screening all Michigan newborns for critical congenital heart disease using pulse oximetry prior to hospital discharge. MDCH has developed resources for parents that could be used by newborn screening programs.
The Wisconsin* SHINE Project: The Wisconsin SHINE Project (Screening Hearts in Newborns) is a pilot project through the University of Wisconsin School of Medicine and Public Health, the Medical College of Wisconsin and the State of Wisconsin designed to implement universal screening for CCHD. The SHINE team has developed an informative website and brochures for families.

Utah Fact sheet for parents and families - Spanish