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: 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

• 1/17/2018 Increasing Access to Contraception in the Context of Zika Preparedness
  
• 10/4/2016 Zika Funds Approved and Shutdown Averted
• 8/3/2016 AMCHP joins over 50 health organizations in signing a letter calling -- again -- for Congress to pass a funding package
• 6/28/2016  AMCHP Dismayed by Congressional Inaction on Public Health Emergency
• 6/14/2016 Coalition Seeks Highest Possible Level of Funding
• 5/26/2016 AMCHP May 26 webinar/conference call on Zika virus for Title V leaders​​
• 5/18/2016 Zika Coalition Urges House to Provide Emergency Funding
  
• 5/5/2016  AMCHP CEO Advocates For Bipartisan Support of Zika Funding
• 4/5/2016 AMCHP Urges Congress to Provide Emergency Funding Before Mosquito Season
• 2/23/2016 Coalition Urges Quick Action to Limit Birth Defects
• 2/12/2016  Zika Coalition Supports President's $1.8B Request

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.

• Download the slides (PDF)
  
• Access the recording: http://amchp.adobeconnect.com/pqnhquf2c639/
  

AMCHP 2017 Conference: Zika Sessions Resources

• Zika 101 Presentation [PDF]
• Zika Systems of Care Session: Participant Guide [Word Document]
• Zika Systems of Care Session: Gaps Analysis Worksheet [Word Document]
• Systems of Care for Children Affected by Zika: LEND Collaboration Opportunities [PDF Presentation]

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 from AMCHP 2017 Conference]

Tennessee

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

Texas

• Addressing the Zika Virus in Texas [PDF - Presentation from AMCHP 2017 Conference]
• Texas Plan for System of Services for Children with Congenital Zika Syndrome - Flowchart [PDF]
• Zika Website: http://www.texaszika.org

Other Resources on Zika virus

• Zika May Place Burden on Medicaid by Emma Sandoe
• Without federal funding, counties brace to confront Zika on their own from Washington Post
• ASTHO's Zika webpage: includes an overview of the Zika virus, latest news and links to resources from state and territorial health departments.
• The Faces of Zika
  
• HRSA Resource Guide for States and Communities Caring for Infants and Children Affected by 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:

• "Screening for CCHD" - Christopher A. Kus, MD, MPH, Associate Medical Director, Division of Family Health, NYS Department of Health
• "Screening for CCHD Using Pulse Oximetry" - Jill Glidewell, RN, MSN, MPH, Epidemic Intelligence Service Officer, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
• "Screening for CCHD Using Pulse Oximetry: New Jersey's Experience" - Lorraine Freed Garg, MD, MPH, Medical Director, Newborn Screening and Genetic Services, New Jersey Department of Health and Senior Services

Resources

• 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

• CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD)
• National Birth Defects Prevention Network
• CDC: Learn the Signs. Act Early.
• Discretionary Advisory Committee on Heritable Disorders in Newborns and Children

References
1. http://www.cdc.gov/ncbddd/AboutUs/index.html