CDC’s National Center on Birth Defects and Developmental Disabilities Activities to Understand Stillbirth

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is working to learn more about the loss of a baby due to stillbirth. Read about their efforts below.

Stillbirth Surveillance Project, 2005 – 2015

From 2005 – 2015, NCBDDD supported the expansion of two birth defects tracking systems to include all stillbirths. These two tracking systems identify babies with birth defects in their study areas by having staff continually review medical records at multiple healthcare facilities. The information gathered is then reviewed by doctors and other specialists. Although time- and resource-intensive, these methods more accurately identify babies with birth defects, as compared to relying only on reports submitted by hospitals or healthcare providers. It was anticipated that by expanding these birth defects tracking systems to include all stillbirths, more accurate and complete data about stillbirths would be collected.

For this project, birth defects tracking systems in metropolitan Atlanta and the state of Iowa were expanded to identify all pregnancies resulting in a stillbirth. Both programs

• Evaluated if their expanded birth defects tracking systems effectively captured all stillbirths, both those with and without birth defects, among residents in their tracking areas;
• Monitored and reported on the occurrence of stillbirth among the population in their tracking areas;
• Served as a registry for studies on factors that might increase the risk for stillbirth; and
• Served as a resource for education and evaluation of strategies to prevent stillbirths.

Stillbirth Risk Factor Pilot Project, 2016– present

NCBDDD has recently funded a new project with Arkansas and Massachusetts to better understand factors that might increase the risk for stillbirth. These states’ birth defects tracking systems have been expanded to identify all pregnancies resulting in stillbirth. These programs are

• Expanding methods to track stillbirths;
• Analyzing data on stillbirths using new methods to identify modifiable risk factors; and
• Publishing study results in peer-reviewed journals to better inform both the medical community and the public about how to reduce the risk or prevent stillbirths.

Notable Accomplishments of NCBDDD Activities on Stillbirth

• Obtained expert input: CDC hosted two meetings with stillbirth experts to address the challenges involved in stillbirth tracking and research.
• Began stillbirth tracking: Tracking of all stillbirths in Atlanta and Iowa began in 2006. Results from Atlanta showed that combining data from both the birth defects tracking system and fetal death reports gave a better estimate of stillbirth, increasing the total number of identified stillbirths by 30%.
• Expanded stillbirth tracking: During 2010-2011, Iowa worked with programs in Hawaii, Colorado, and New York to implement the review and tracking of all stillbirths in either the entire state (Hawaii) or selected counties (Colorado and New York).
• Shared results: Findings from both Iowa and Atlanta experiences have been published and continue to improve understanding about how stillbirth information is recorded, both in the medical record and on fetal death certificates.
• Collaborated: CDC has continued to work with other federal and state agencies, and private organizations interested in stillbirth, to further raise awareness of the public health importance of stillbirth.