An embodied understanding of living with a heart condition from 'cradle to grave'

Objectives: For every 1000 babies born, eight will have a heart condition. Congenital Heart Disease (CHD) is a success story of modern medicine; 90% of these babies will survive into adulthood compared with 20% in the 1940s (Warnes et al, 2001). Lifelong monitoring is indicated for this growing adult population who live with an increased mortality and morbidity burden (Greutmann et al, 2015). Being born with a heart condition also presents increased vulnerability to psychological difficulties including anxiety, depression and PTSD, previously accounted for by secondary factors (e.g. interrupted education, feeling different, discrimination) (Kovacs & Utens, 2015; Czosek et al, 2012; Morton, 2012; Karsdrop et al, 2007). Methods: Porges' Poly Vagal Theory (PVT) offers a more holistic account of CHD (Morton, in Press; 2017). PVT provides an embodied understanding of our nervous system, senses, emotions, social self and behaviours. Porges proposes the nervous system employs a phylogenetic hierarchy of strategies to self regulate and respond to threat, adapting to our environment when we are safe (enabling the 'Social Engagement System') and unsafe (enabling 'fight-flight' or 'immobilisation' defence mechanisms), with homeostatic variability shaped during infancy. This theoretical paper proposes that since the heart is central to our nervous system cardiac anomalies may compromise the stress response, emotional regulation and the social self, further heightened by medical disruptions to the biologically embedded need for safe social connection. Results & Conclusions: This understanding has profound implications, across the lifespan, for this population explored here drawing on contemporary psychological models including Attachment Theory, Body Psychotherapy and Neuropsychological Theories of Compassion (Bowlby, 1977; Hoffman et al, 2011; Keltner, 2010; Gilbert, 2009; Rothschild, 2000). Strategies to optimise normal development of social and defensive behaviours (by facilitating autonomic attunement with the attachment figure), inform therapeutic interventions (focusing on safety and stabilisation) and better humanise medical care are considered.