Congenital Heart Disease (CHD) is the most commonly diagnosed birth abnormality in the US. With great advances in surgery and medicine, however, survival rates have improved by 75% since the 1940s. Welcome news, of course, as only a few decades ago these birth defects were considered a death sentence, but as with any chronic condition, survival does not mean the issue is cured. With better medical care, babies born today with CHD have a good chance of surviving, but throughout their entire lives they can face surgeries, invasive treatments, lifelong monitoring, frequent medical check-ups, and significant limitations on physical activity, in addition to poor public awareness which can have an impact on social inclusion and understanding. Much attention has rightly been focused on the medical needs of these children and on providing their parents and caretakers with resources and information to navigate the complexities of this chronic condition.
Little attention, however, has been paid to the psychosocial impacts on these individuals, especially as they grow, mature, and become adults living with a serious, chronic medical condition. Prevalence rates for anxiety, depression, and PTSD are significantly higher (2-3x in some cases) for people living with CHD than the general adult population. From feeling self-conscious about scars and limitations on physical activity and sense of loss around so many of life's little normalcies, to frequent hospital visits and living in constant fear of an emergency, this condition is ever-present. Liza Morton and Tracy Livecchi are both mental health professionals who have developed a specialty in working with clients who have chronic medical conditions, and they are both themselves living with CHD.
In Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease (Oxford UP, 2023) they set out to provide the resources and support they have been looking for their entire adult lives. While their powerful personal stories are woven into the narrative, the book is focused on providing evidence-based coping and self-care skills for adults living with CHD.
Tracy Livecchi and Liza Morton, "Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease" (Oxford UP, 2023) | In Conversation: An OUP Podcast - Listen or read transcript on Metacast
