Fetal deaths are an important public health problem with a tremendous emotional and psychological impact on families,1,2
and those that occur at 20 or more weeks of gestation (i.e., stillbirth or late fetal death) account for less than 1% of all births but nearly one-half of all perinatal deaths.3
In 2004, about 4.1 million live births and 25,655 stillbirths (fetal deaths at 20 or more weeks of gestation) were registered in the U.S.4
Significant racial disparity exists in the occurrence of stillbirths, with rates among non-Hispanic African American mothers at two to three times the rate of non-Hispanic white mothers.5–10
A number of risk factors for stillbirth have been identified, including low socioeconomic status, very young and advanced maternal age, obesity, multigravida, smoking, hypertension, diabetes, and congenital anomalies;11–23
however, the factors that contribute to most stillbirths remain unknown.24–26
One of the challenges to conducting epidemiologic studies of stillbirth has been the limited availability of reliable population-based surveillance data. By law, fetal deaths must be reported in the United States; however, reporting requirements and, to a lesser extent, the criteria used to define fetal death vary.27
As a result, the use of fetal death reports (FDRs) as a source of surveillance data has been problematic.27–36
In 2005, two birth defects surveillance programs, the Metropolitan Atlanta Congenital Defects Program (MACDP) and the Iowa Registry of Congenital and Inherited Disorders (IRCID), initiated pilot studies to examine the feasibility of leveraging the resources of existing birth defects surveillance programs to conduct surveillance of stillbirths. MACDP and IRCID are population-based birth defects surveillance systems that use active case finding methods to identify all infants or fetuses with birth defects. Trained abstractors regularly visit birth hospitals, pediatric hospitals, specialty clinics, and perinatal offices to systematically search available data sources for cases of birth defects.
MACDP was established in 1967 and is currently administered by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention; it is described in detail elsewhere.37
IRCID was established in 1983 through the joint efforts of the University of Iowa, the Iowa Department of Public Health, and the Iowa Department of Human Services, and is located within the College of Public Health at the University of Iowa.38
The common objectives of these two stillbirth surveillance pilot projects are: (1
) to evaluate the feasibility of expanding a population-based birth defects surveillance system to incorporate data from existing medical records on fetal deaths, (2
) to monitor and report on the occurrence of fetal deaths in the surveillance population, (3
) to serve as a registry for etiologic studies on fetal deaths, and (4
) to serve as a resource for education and evaluation of prevention programs.
Using existing population-based birth defects registries that employ active case finding is a potentially novel approach to address the data gaps and limitations in FDRs. This approach is both advantageous and beneficial to birth defects surveillance programs for three primary reasons. First, it is more efficient because existing birth defects programs have the necessary infrastructure already in place to incorporate surveillance data on stillbirths. Second, existing programs that are responsible for surveillance of birth defects would benefit directly from these expanded activities because intensifying surveillance on stillbirths likely will increase the identification and ascertainment of birth defects.39
Third, this approach may guide our understanding of the etiology of deaths occurring at various gestational ages. Furthermore, these intensified surveillance activities have the potential to inform, complement, and enhance existing fetal/infant mortality programs, and such programs should be involved in the development, implementation, and utilization of these surveillance activities when possible.
As a first step to planning for these pilot projects, two expert workshops were conducted during April and July 2005 to address three key aspects for active, population-based surveillance on stillbirths: (1) case identification and ascertainment, (2) data collection, and (3) data use and project evaluation. The primary objective for both workshops was to provide guidance on the implementation of the two pilot studies at IRCID and MACDP. Secondary discussion related to how other state-based birth defects surveillance programs might incorporate similar activities, including benefits and barriers. The objectives of the first workshop were to identify and address issues related to case definition and ascertainment, data collection and quality, and data use and project evaluation. The objective of the second workshop was to review approaches and challenges to the clinical-pathological aspects of stillbirth evaluation. Participants in these workshops included experts in obstetrics, maternal-fetal medicine, perinatology, midwifery, pediatrics, epidemiology, and pediatric pathology. This article summarizes the key findings of these two workshops.