Life and Death of a Child With Down Syndrome and a Congenital Heart Condition: Experiences of Six Couples Deirdre Reilly, Jaci Huws, Richard Hastings, and Frances Vaughan Abstract Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured interviews were used to explore the experiences of 6 couples whose child with Down syndrome and a CHC had died. The interviews were analyzed qualitatively using interpretative phenomenological analysis (IPA), and 4 themes emerged: dilemmas associated with the dual diagnosis; treatment decisions during the life and the death of their child (‘‘We had to make a decision’’); ways couples coped when bereaved (‘‘We weren’t really going through it together’’); and ripples from the child’s life. There was a high degree of similarity of experience within couples. Differences between couples existed in their experiences of coping and supporting each other. Practical implications include the importance of considering the specific needs of couples, individuals, and fathers within partnerships. DOI: 10.1352/1934-9556-48.6.403 Several research reports focus on the experi- ence of parenting a child with Down syndrome compared with children with other developmental disorders (e.g., Abbeduto et al., 2004; Poehlmann, Clements, Abbeduto, & Farsad, 2005). Some data are consistent with the notion of a ‘‘Down syndrome advantage,’’ whereby parents of children with Down syndrome report better outcomes than do parents of children with other disabilities. Although this advantage is much debated, the most recent research supports this hypothesis (Corrice & Glidden, 2009), with a variety of advantages found for families of children with Down syndrome, including lower divorce rates for families of children born between 1990 and 2002 (Urbano & Hodapp, 2007), less family conflict, and more mother–child closeness when males were 10– 23 years old (Lewis et al., 2006). However, two areas that have received little attention are the joint experiences of couples raising a child with Down syndrome and parental experiences associat- ed with particular life events relating to the child with Down syndrome. In this article, we investigate the reactions of couples when their child with Down syndrome dies. Within couples raising children with Down syndrome, mothers and fathers have been found to use different ways of coping and finding support, with mothers showing higher levels of social support seeking, suppression of competing activi- ties, turning to religion, and emotional expression than fathers (Spangenberg & Theron, 2001; A. Sullivan, 2002). Couples also experience different sources of stress. Whereas fathers’ stress related to the child’s diagnosis of Down syndrome, mothers’ stress has been found to be related to parental role, involvement in child care, and father’s stress (Cuskelly, Jobling, Chant, Bower, & Hayes, 2002; Roach, Orsmond, & Barratt, 1999). Pelchat, Lefebvre, and Perrault (2003) suggested that the expectations of fathers within families may be more specific and more difficult to fulfill than mothers’. For example, in families of children 2–5 years old, fathers felt a greater need for support from male members of their extended families (Pelchat et al., 2003). Pelchat and colleagues proposed that INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 6: 403–416 | DECEMBER 2010 ’American Association on Intellectual and Developmental Disabilities 403