Birth defects are structural changes that can affect almost any part of the body, such as the heart, brain, or foot, and can cause lifelong health challenges. As medical care and treatment have improved, babies and children with birth defects are living longer and healthier lives. Most are now living into adulthood. Recent reports show that rates of infant deaths due to birth defects have declined by 10% in the United States. However, even today, every 4½ minutes a baby is born with a major birth defect. Furthermore, there are persistent racial/ethnic disparities when considering healthy communities and healthy babies. In a 2019 study, researchers noted that while estimates on birth defects rates are made on the best available data, “[e]valuation of prevalence rates by maternal race/ethnicity may improve our understanding” of disparities and improve efforts to reduce them.
January is National Birth Defects Awareness Month. This is a time to raise awareness about birth defects and highlight efforts to improve the health of people living with these conditions across their lifespan. Our partners at the National Birth Defects Prevention Network (NBDPN) promote this observance annually and their theme this year is “Healthy Communities, Healthy Babies.” Not all birth defects can be prevented. However, we encourage all pregnant people and prospective parents to make healthy choices and adopt healthier habits to help lower their risk of having a baby born with a birth defect.
5 Tips from NBDPN & CDC for Preventing Birth Defects:
- Tip 1: Get 400 micrograms (mcg) of folic acid every day.
- Tip 2: Plan a visit with your healthcare provider to support a healthy pregnancy.
- Tip 3: Reduce your risk of infections.
- Tip 4: Care for your body and mind, before and during pregnancy.
- Tip 5: Avoid harmful substances during pregnancy, such as alcohol, tobacco, and other drugs.
Join AMCHP and NBDPN in improving health in your community! Consider submitting suggestions to add to NBDPN’s interactive Resource Map by filling out this form or replying to any of the #HealthyCommunitiesHealthyBabies social media posts to mention your local community resources! In addition, you can find out more about this observance and NBDPN’s efforts here. Together, we can work towards a day when all babies are born with the best health possible!
Information and Resources
- CDC National Birth Defects Awareness Month Toolkit
- NBDPN Tips Sheet
- NBDPN Tips Resource Map
- CDC Highlight of Birth Defects Across the Lifespan
- Stories from people with lived experiences
- Mother to Baby podcast series: episodes 47, 48, 49, & 50
January 9, 2023
“National Birth Defects Awareness Month is an opportunity for us to raise awareness and share birth defects prevention tips. It is also a vital time for us to consider the systems in which communities where people live that may lead to certain birth defects and the barriers they face in access to health care and equity in living. AMCHP and our partners have a joint commitment to anti-racism and racial equity, so it is the responsibility of our organizations and other leaders in public health to ensure that everyone has access to the resources they need to be healthy.
AMCHP is proud to partner with NBDPN & CDC to continue building capacity and engagement between Title V, maternal & child Health (MCH), and children & youth with special health care needs (CYSHCN) programs and birth defects surveillance programs. These partnerships are critical investments that can improve systems for surveillance, referrals, care coordination, and support for children with birth defects and their families across the lifespan.”
AMCHP’s Work Related to Birth Defects
Partnership With NDBPN
On November 10, 2021, the Association of Maternal & Child Health Programs (AMCHP) and the National Birth Defects Prevention Network (NBDPN) announced a new partnership to build capacity and engagement between Title V Maternal & Child Health (MCH), Children & Youth with Special Health Care Needs Programs (CYSHCN), and birth defects surveillance programs. Through a grant from the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities (CDC NCBDDD), AMCHP and NBDPN work with our members to better understand the barriers and opportunities for collaboration between Title V and birth defects surveillance programs and provide technical assistance activities, resources, and engagement opportunities to promote collaboration and intentional alignment between Title V and birth defects surveillance programs. [read more]
GSEP Project on Birth Defects Surveillance
In the most recent cohort of AMCHP’s Graduate Student Epidemiology Program (GSEP), Sara Hacker, an intern from the host site of Montana’s Department of Public Health and Human Services (MT DPHHS) focused their project on researching and compiling recommendations to start a state birth defects registry for MT DPHHS Title V program to consider. Under the supervision of Miriam Naiman-Sessions, the result of their 10-week internship culminated in a final presentation of all her work at the conclusion of GSEP 2022. AMCHP supported Sara by conducting tailored, individual check-ins, offering an enrichment curriculum focused on health, racial, and other forms of equity in epidemiology, and paying her a competitive stipend for her time. As a result of her GSEP project, MT DPHHS has strengthened the relationship between the state laboratory and newborn screening program. These groups are now collaborating on a data modernization project to replace the existing data systems used to collect newborn screening data and identify an epidemiologist to work toward the development and management of this new surveillance system.
A recording of her presentation is available here!
GSEP supports students in completing a host site project focused on needs assessment, data analysis, and/or program monitoring and evaluation, and participate in weekly enrichment activities in partnership with the host site in the area of Maternal and Child Health Epidemiology. Student and host site applications for the 2023 cycle open January 12th! Visit the GSEP webpage for more information on how to apply.
Policy & Government Affairs
AMCHP supports the work of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) within the Centers for Disease Control and Prevention (CDC) to advance the health and well-being of infants and children with birth defects and developmental disabilities. AMCHP’s Government Affairs team raises awareness on Capitol Hill about the needs of individuals with birth defects and their families and the critical role NCBDDD programs play within federal and state systems addressing those needs. Past AMCHP activities have included:
- a Congressional briefing on the impact Sickle Cell Disease has on women of reproductive age;
- roundtable discussions amongst Title V and other public health leaders on the impact of Zika virus and COVID-19 on infants; and
- national letters to Congressional leaders in support of increased funding for the Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET).
AMCHP Information & Resources
- MCH Bridges Podcast episodes:
- Course: Racism as Root Cause of Birth Disparities
- Pulse Articles:
- Policy and Advocacy:
- AMCHP Leads 55 National Organizations Urging Fiscal Year 2023 Funding for CDC’s Surveillance for Emerging Threats to Mothers and Babies Network in Letter to House and Senate L-HHS Appropriations Leadership
- AMCHP Leads Coalition in Support of Bipartisan House Dear Colleague Letter Urging Fiscal Year 2023 Funding for CDC’s Surveillance for Emerging Threats to Mothers and Babies Network
- AMCHP Leads Coalition in Support of Senate Dear Colleague Letter Urging Fiscal Year 2023 Funding for CDC’s Surveillance for Emerging Threats and to Mothers and Babies Network
- MCH Innovations Database Promising Practices:
- MCH Innovations Database Policy Developments and Implementations: