Birth Defects & Developmental Disabilities

Birth defects affect 1 in 33 babies and are a leading cause of infant death in the U.S.  In addition, about one in six children in the U.S. have one or more developmental disabilities or delays. 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 and collaborates with key partners in addressing these needs.

Zika Virus button Zika Virus: Information and Resources

AMCHP is monitoring news and information related to the Zika virus. Resources, links, and information about developments will be shared below.

New item gifPreparing for the Future: Lessons Learned from Zika and Long-Term Implications

Many lessons were learned from the 2016‒2018 response to the Zika epidemic. Title V MCH programs played a critical role in the emergency response, and it is important to center MCH populations before, during, and after public health emergencies going forward. Additionally, Zika’s impact on children and families may last for years. Those who work in and support services and systems of care for children and families should prepare now to ensure they are able to meet those future needs.

Zika publications cover imageAMCHP, in partnership with March of Dimes and with support from CDC, developed a series of resources to share state experiences and lessons learned from the Zika response, and highlight implications for the long-term needs, opportunities for improvement in services and systems of care, and areas to prioritize during future public health threats to MCH populations.


AMCHP and State Resources on Zika

AMCHP Resources

State Resources​

AMCHP 2017 Conference: Zika Sessions Resources

Georgia: Zika Condom Kits Info and Pricing

Rhode Island: Systems of Care for Children Affected by Zika Virus: Rhode Island Zika Task Force [PDF - Presentation at AMCHP 2017]

Tennessee: Zika and Enhancement of Birth Defects Surveillance: Tennessee Experience [PDF - Presentation at AMCHP 2017]

Texas:

If you have a state resource you would like to share, please email Kate Taft at ktaft@amchp.org

AMCHP's Advocacy on Zika

Other Resources on Zika virus

CDC: Zika Virus Resources

Visit the CDC's website for up to date information, data, resources, and tools about Zika: https://www.cdc.gov/zika/index.html.

Project Areas and Resources

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 (2012)
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:

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