BACKGROUND: Birth defects, otherwise referred to as congenital anomalies, are one of the most common causes of infant mortality, contributing to 1 of every 7 infant deaths in the state of Ohio. Fetuses diagnosed with an anomaly are twice as likely to be born premature and up to ten times as likely as infants without anomalies to die within their first year of life. In spite of this knowledge, the significance of congenital anomalies is frequently omitted from conversations related to infant mortality reduction, particularly at the local level. The purposes of this project were to (1) examine trends in congenital anomaly-related infant deaths, specifically for Franklin County, Ohio; and (2) narrate the numerical data using local women’s stories of anomaly-related loss.
METHODS: Ohio Vital Statistics data were used to examine trends in infant mortality caused by congenital anomalies in Franklin County from 2007-2015. Qualitative data from the 2016 Franklin County Fetal-Infant Mortality Review (FIMR) program’s cases of anomaly-related death were also analyzed for themes related to the identification of anomalies, choice to carry the fetus to term, and experiences with loss.
RESULTS: Though all-cause infant mortality in Franklin County has declined since 2007, congenital anomaly-related mortality has steadily increased over this same period. All-cause infant mortality is higher among non-Hispanic Black women, though anomaly-related mortality proportionately affects a greater number of non-Hispanic White women. Twenty-five percent of the 2016 FIMR cases indicated an anomaly as a primary cause of death. For each of these cases, congenital anomalies were not identified until the 18th week of pregnancy or later. Many chose to carry the pregnancy to term in spite of the prognosis; however, those wishing to terminate had difficulty accessing services due to their advanced gestational age, their need to travel to out-of-county to find a facility willing to do the procedure, lack of insurance coverage, and out of pocket costs. After the demise, many women expressed overwhelming grief and a dearth of bereavement support.
CONCLUSIONS: Combining numerical data with personal narratives validates women’s lived experiences and provides impetus for further conversation about the prevention of congenital anomalies in relation to infant mortality reduction efforts. Recommendations emerging from this project include: advocating for preconception and interconception health, ensuring that women have access to effective and reliable birth control options, early access to prenatal care, and selective termination, if desired.