Birth Defects and Infant Disorders Resources
Birth defects can impact many aspects of an individual’s life, throughout their life. Everyone’s journey is unique, shaped by their specific condition, individual strengths, and the support system in place. What’s important to remember is that a community of support can help people with these conditions no matter what health experiences they are navigating.
It is important for healthcare providers, policymakers, and the broader community to recognize their role in supporting a future where everyone has access to the care and support they need. CDC works with partners to create resources to improve care for people living with birth defects, support healthcare provider education, and raise awareness about birth defects and early childhood onset conditions.
For Healthcare and Public Health Professionals
- Clinical Decision Support for Alcohol Screening and Brief Intervention | CDC
CDC funded the MITRE Corporation to develop standards-based clinical decision support (CDS) for alcohol screening and brief intervention. These CDS tools can assist with adoption of this important clinical preventive service in primary care settings. Users can integrate the tools into electronic health record (EHR) systems and other digital formats to inform decisions and improve healthcare delivery. - Congenital Heart Defects Toolkit for Physicians | CDC
In partnership with the American Academy of Pediatrics (AAP), CDC created a digital toolkit with resources and online trainings for physicians to help ensure that people with heart defects get the specialized lifelong congenital cardiac care they need. This toolkit contains video trainings, social media materials, customizable content for emails and newsletters, conversation starters, and infographics. - Fetal Alcohol Spectrum Disorders: Resources for Prevention and Care | CDC
These resources provide tools and education for providers to help prevent alcohol use during pregnancy and provide care for children with Fetal Alcohol Spectrum Disorders (FASDs) and their families. - Folic Acid Partner Toolkit | CDC
These social media messages, graphics, and resources can help providers raise awareness about the role of folic acid before and during pregnancy in helping to prevent birth defects such as spina bifida and anencephaly. - Muscular Dystrophy Diagnostic Tools | CDC
Tools to help primary care clinicians, therapists, and other specialists diagnose child muscle weakness. Diagnostic tools can decrease the time between initial signs and first diagnosis and improve early intervention and access to care. - SET-NET Partner Toolkit | CDC
CDC’s Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET) aims to understand the outcomes of health threats, such as COVID-19, hepatitis C, syphilis, and Zika, on pregnant people and their babies by collecting data from pregnancy through childhood. These sample messages and visuals help spotlight the important work that SET-NET performs and spread the word about the benefits to families and communities. - Care Coordination for Youth and Young Adults with Spina Bifida Infographic
AAP created these illustrative guides to reinforce the value added by having a care coordination team to support youth and young adults with spina bifida as they transition from pediatric to adult focused healthcare, while highlighting the unique needs of patients with spina bifida. It also helps pediatricians and other healthcare professionals in supporting youth and young adults through the healthcare transition process. - 10 Essential Questions for Disability Inclusion in Health Agencies | ASTHO
People living with disabilities make up more than one-fourth of the United States population and therefore are impacted by all public health issues. This infographic from the Association of State and Territorial Health Officials (ASTHO) serves as a tool to foster conversations in health agencies around planning programs, policies, and activities to better serve individuals with disabilities. - Advancing Preparedness for Life Support Users During Power Outages | ASTHO
This report provides a roadmap for how jurisdictions can improve their support for people who depend on life support devices and other electric-powered medical equipment during power outages. - Public Health Emergency Planning Toolkit | ASTHO
This ASTHO report, which was co-authored with the World Institute on Disabilities, answers top questions around disability preparedness initiatives, and prioritizes inclusive planning while providing overarching guidance that can be applied to a variety of health and public health systems and structures. The report highlights key planning considerations to ensure public health emergency plans include people with disabilities. - Healthcare Professionals – MotherToBaby Resources
MotherToBaby is a service of the non-profit Organization of Teratology Information Specialists, the professional scientific society that is comprised of experts in the field of birth defects prevention. They have patient education materials and healthcare professional resources available by specialty.
For Families and Individuals
- “Learn the Signs. Act Early.” | CDC
CDC’s website has information on the developmental milestones children should reach from 2 months to 5 years and information on what to do if there are concerns about a child’s development to help access the services and supports that are available to babies and young children with developmental delays and disabilities and their families. - Muscular Dystrophy – Tool for Parents Helps Address Concerns | CDC
This online resource is for parents who are concerned about the physical development of their child. Parents can utilize this tool to identify signs of development delays when their child stands, walks, climbs stairs, holds toys, and other activities. This information can be helpful as parents prepare to talk to their child’s doctor. - Resource Directory – FASD United
FASD United maintains a directory to help connect individuals with Fetal Alcohol Spectrum Disorders (FASDs) and their families with the diagnostic, intervention, and other clinical services they need. - Health Care Transition Support Videos for People Impacted by Spina Bifida (aap.org)
AAP created 6 educational videos that highlight key timelines for health care transition (HCT) from pediatric to adult-focused health care, and strengthen collaboration and coordination between clinicians, specifically for youth and young adults with spina bifida. The videos also aim to emphasize the needs of individuals with spina bifida and address support for cognitive and physical challenges which could impact self-management and quality of life. - Spina Bifida: Helping Teens Transition to Adult Centered Care – HealthyChildren.org
HealthyChildren.org is the AAP’s parenting website. This article discusses roles for parents and pediatricians in the process of transitioning to adult care for teens living with spina bifida. - Fact Sheets – Pregnancy and Breastfeeding Exposures | MotherToBaby
MotherToBaby offers fact sheets that answer frequently asked questions about many common exposures during pregnancy and breastfeeding, including medications, recreational substances, cosmetic treatments, health conditions, infections, vaccines, and more. Available in English and Spanish, they summarizes available scientific information on whether people and their developing babies are at risk because of an exposure in their environment.
