Birth Defects & Developmental Disabilities

Birth defects affect 1 in 33 babies and are a leading cause of infant death in the U.S. More than 5,500 infants die each year because of birth defects. In addition, over 500,000 children are diagnosed with a developmental disability.1 State MCH and CYSHCN program directors have key leadership roles in assuring that families have access to the necessary information, programs and services to assure healthy pregnancies and birth outcomes, health before and after pregnancies, optimal infant and child development, and successful transition of children to adult care in their states. Through development of resources, technical assistance and capacity building activities, AMCHP supports and strengthens its members’ work in addressing these needs and collaboration with key partners to improve birth outcomes and the health of the public.

Zika Virus button Zika Virus: Information and Resources

AMCHP is closely monitoring news and information related to the Zika virus. Resources, links and information about developments, including prevention, symptoms, treatment, and materials pregnant women will be shared below.

Infographics about Zika

Data, Surveillance and Action for Pregnancy and Zika in the U.S.

AMCHP's Recent Advocacy on Zika

AMCHP and State Resources on Zika

Webinar: Lessons Learned Beyond Zika - Responding to Crises from a Maternal and Child Health Perspective 

October 10, 2018 - This webinar featured state examples from Pennsylvania and Texas on how they were able to respond to the Zika virus, the importance of relationship-building and an interdisciplinary response, and sustainble components that position MCH programs to respond to the next public health crisis.

AMCHP 2017 Conference: Zika Sessions Resources


Rhode Island



If you have a state resource you would like to share, please email Dr. Jeanette Kowalik at

Other Resources on Zika virus

CDC: Zika Virus Resources:

Project Areas

Issue Brief: State Newborn Screening and Birth Defects Program Roles in Screening for Critical Congenital Heart Defects (CCHD)  [October 2013 - PDF]

Newborn Screening Recommendations for Critical Congenital Heart Disease (CCHD): Implications for State Programs
Webinar held March 22, 2012
Hosted by AMCHP, in partnership with the National Center on Birth Defects and Developmental Disabilities (NCBDDD)/CDC, this webinar focused on the background of the point-of-care CCHD screening recommendations and potential roles of state health departments. Presentations included considerations for roles of state health departments with CCHD screening, an overview of state activities, and lessons learned from New Jersey’s experience with implementing mandated screening.

The full webinar recording is available here. Speaker presentations are available as PDFs below:


  • Forging a Comprehensive Initiative to Improve Birth Outcomes and Reduce Infant Mortality: Policy and Program Options for State Planning. This AMCHP compendium presents a series of policy and programmatic options state officials and their partners can use to accelerate progress in improving birth outcomes, reducing prematurity and infant mortality and narrowing glaring health disparities. Download the complete document, or individual sections, on our Infant Mortality webpage.
  • State Birth Defects Performance Measures: AMCHP reviewed TVIS to identify states that have adopted performance measures related to birth defects surveillance. (May 2011)

External Resources