Families’ experiences with supports after receiving a prenatal diagnosis of down syndrome

Abstract

In the United States, families whose infants or toddlers have a diagnosis that results in a high likelihood of developmental delay or disability are automatically eligible for early intervention (EI). When families know prenatally of this diagnosis, they are not eligible for EI until their baby is born despite other developmental programs starting during pregnancy. Seventeen families who had a prenatal diagnosis of Down syndrome shared their experiences with formal, intermediate, and informal resources during their pregnancy. Findings centered on families’ appraisals of those resources to meet their desire for a positive, hopeful pregnancy and parenting vision. Implications are discussed for early childhood prenatal home visitors, early childhood professionals overall, and EI systems and professionals.