Advocating for a Care-Based Ethic: Stories of Pregnancy and Birth from Caregivers of Children with Down Syndrome

Down syndrome (DS) impacts about 1 in every 640 childbirths in the United States. While quality of life has improved for people with DS, systemic inequities and deficit-based perceptions have persisted throughout history, with material impacts on people with DS and their caregivers. Researchers have documented how caregivers of children with DS have had negative experiences with healthcare providers and genetic counselors, whose biased views about DS translate into subtle and overt pressures. Few studies explicitly focus on the experiences of Caregivers of Color, multilingual families, as well as families with varying economic experiences who have children with DS. This qualitative inquiry examined nine caregivers’ pregnancy and birth experiences, employing critical and intersectional methodological approaches. We inductively analyzed data collected from interviews, observations, and researcher memos, mapping them onto a cure versus care ethical framework. Four themes illuminated the persistence of cure-seeking and deficit-laden attitudes providers held about DS, which included pressuring mothers to terminate, reprimanding them for refusing invasive testing, and asking intrusive questions that disregarded their emotions, all under the veil of care. These experiences were magnified among Caregivers of Color, who described how their concerns and autonomy were dismissed. This study offers important ethical implications for researchers, health care practitioners, families, and community members who engage caregivers of children with DS, emphasizing that care should not begin or end in the delivery room.