Heart and mind to the fore

This long-awaited – and, to my knowledge, first-ever – patient-oriented book attempts to encompass the broad spectrum of experiences and challenges that living with a congenital heart condition (CHC) can entail, and how to cope. Across 12 chapters interwoven with poignantly personal accounts, Tracy Livecchi and Dr Liza Morton present narratives that allow the reader not only to learn but also to heal.

Despite congenital heart disease affecting every 8 in 1000 newborns, there is comparatively little research on the field compared to other, less prevalent, serious life conditions, such as childhood cancer. Furthermore, the difficulties of living with CHC mean that the research that does exist is largely carried out by scholars who are not living with CHC themselves and it is rare to witness CHC patients advocating for their own group from the position of an 'expert'.

Livecchi and Morton accomplish this in their portrayal of complex and diverse topics such as childhood trauma, living with uncertainty about prognosis, coping with medical procedures, bereavement, grief and loss, shame and guilt, and posttraumatic growth. With the help of quotes from CHC patients all over the world, they put into words thoughts many would likely recognise, yet struggle to express. Reading as both a GUCH [grown-up with congenital heart defect] and a clinical psychologist, it is refreshing and reassuring to see complex psychological theories and tools presented in such a well-thought-out and patient-friendly manner.

Each chapter is delivered with a delicacy and precision that could convincingly lead the reader into thinking that the words were written specifically for them. Yet make no mistake – this is a raw, emotionally draining book, and – as the book states – readers would be advised to carefully consider which chapters they feel comfortable in tackling.

Even as someone with daily workplace exposure to the psychological struggles of somatic illness, some sentences stopped me dead in my tracks, bringing me right back to my own personal experiences. I can therefore only imagine the strength and sacrifice that the authors went through. Having never experienced anything similar, most people will struggle to ease the burden of CHC. This book truly represents a shared playing field and a common framework for such discussions and, ultimately, I wish anyone who has ever wanted to better understand me would read it.

As a patient, I would like to express heartfelt gratitude to the authors from myself and the wider CHC community; as a fellow clinician, I commend them for the rigour and importance of their work.

Reviewed by Lene Osmundsen, a Chartered Psychologist working in a somatic hospital, and Board Member of the European Congenital Heart Disease Organisation.