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Why this book matters
- Over 250,000 adults in the UK are living with Congenital Heart Disease (CHD) – the term for a range of birth defects that affect the normal way the heart works.
- Around 12 million people live with CHD globally, the most common congenital condition affecting 1 in 125 babies.
- For the first time there are now more than twice the number of adults with CHD than children, since around 90% now survive compared to 20% during the 1940s.
- Lifetime prevalence of anxiety, depression & PTSD is as high as 50% for people living with CHD
- Great need for psychosocial support for CHD patients.
- Written by two authors who themselves were 'pioneering patients' born with CHD & as mental health professionals now working to help improve well-being & recovery for people living with lifelong medical conditions.
- First book to focus on the psychosocial, emotional, & practical challenges in living with CHD – particularly the challenges of living as an adult with CHD.
- Grounded in the most recent evident base, the authors' research, clinical expertise & lived experience.
- Helps to create a plan for healthy coping strategies to support people living with CHD, their families, & healthcare professionals.
- Gives patients the empowerment tools necessary to move forward productively in adulthood.
Find out more from these interviews, podcasts, webinars & related articles
Ireland AM talkshow, Feb 2023
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Heart Children Ireland Conference, Dublin, Feb 2023
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Beat goes on - annual transition conference for teenagers and families, Heart Children Ireland in Dublin, Jan 2023
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Today FM Ireland with Matt Cooper, Jan 2023
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The Nine, BBC Scotland, Jan 2023
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The Nine, BBC Scotland, Jan 2023
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Kay Adams Show, BBC Radio Scotland, Jan 2023
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- World's youngest pacemaker baby now doctor fighting heart defects, STV News, Feb 2023
- Youngest pacemaker baby fights for others like her, The Times, Feb 2023
- Larbert mum who underwent pioneering surgery as a baby at heart of raising healthcare standards, Falkirk Herald, Feb 2023
- ‘Miracle’ patient to help create new CHD guidelines, Health and Care Scotland, Feb 2023
- 7 things you need to know about CHD, Readers Digest, Feb 2023
- How to support a friend who is sick, Stylist, Feb 2023
- I was born with a heart condition but it was the medical trauma that left the deepest scars, Stylist, Jan 2023
- How nurses can offer support to patients with congenital heart disease, Independent Nurse, 31st Jan 2023
- 6 Tips when you feel anxious visiting the doctor, Welldoing, 31st Jan 2023
- Larbert mum born with congenital heart disease co-writes book she'd been looking for, Falkirk Herald, 25th Jan 2023
- Doctors gave me a pacemaker when I was 11 days old, BBC News Online, 19th Jan 2023
- 'It’s only now, looking back, I realise how scared I must have been’ — what it’s like to grow up with congenital heart disease' The Irish Independent, 19th Jan, 2023
- Feel anxious about going to the doctor? Here’s how to handle it, Stylist - 11th of Jan 2023
- Healing Hearts & Minds in Patient Library Quarterly - Jan 2023
- What is toxic positivity and why is it harmful? Reader's Digest - 3rd Jan 2023
- 'Healing Hearts & Minds' aims to plug support for congenital heart patients, Interview for The Herald (Glasgow) - Jan 2023
- Interview 'We were told we were lucky to be alive' for Health and Care Scotland - Jan 2023
- Addressing Childhood Medical Trauma: A deeper look at the forgotten adverse childhood experience. Psychology Today, Blog - 16th Dec 2022.
- Interview 'Trauma and the miracle heart baby' for Health and Care Scotland - Dec 2022
Reviews
"Tracy Livecchi & Liza Morton share a story of courage & hope for those who are living with a congenital heart condition. The authors through their own experiences give voice to the CHC community. They relate their own heroic experiences as they sought an understanding of how their diagnosis influenced their ability to live a full life. We learn from their pioneering journey of self-exploration that, even with limited information from the medical community, they sought to understand their feelings & even metabolic resources. The story is optimistic as we learn that with appropriate medical care & a supportive community, individuals with CHC can live full lives, successfully have families, & navigate being a successful professional." - Professor Stephen Porges, Distinguished University Scientist, Indiana University & Founding Director, Traumatic Stress Research Consortium, Kinsey Institute
...
"This is the book for which we've all been waiting. With warmth, respect, & compassion from two highly regarded authors with lived experiences as well as professional training & expertise, Morton & Livecchi offer an incredible how-to guide for adults everywhere coping with congenital heart conditions. I highly recommend this book for everyone in the congenital heart community-patients, families, & health care professionals." - Dr. Adrienne Kovacs, Clinical & Health Psychologist, Equilibria Psychological Health, Toronto, Canada
...
"Tracy Livecchi & Dr. Liza Morton have harnessed their individualized training & experiences both as mental health professionals as well as adults living with congenital heart conditions (CHCs) to create a first-of-its-kind, easily readable, focused, informative, & entertaining primer & guide to awareness of, & release from, the global suffering that commonly occurs in the setting of a lifelong medical condition. We are grateful to Liza & Tracy for their wisdom in calling this out loud, filling a void for the benefit of our patients, their families, & for our colleagues." - Founding Director Boston Adult Congenital Heart (BACH) & Pulmonary Hypertension Program, Laurence J. Sloss, MD Chair in Cardiology, Associate Professor of Medicine, Harvard Medical School, & Dorothy Pearson, Vice President Global Alliance of Rheumatic & Congenital Hearts, & Former Senior Physician's Assistant, Boston Adult Congenital Heart Disease Center (BACH)
...
"This carefully written & touching book takes a novel approach to CHCs. Written for a lay perspective, underpinned by psychotherapy expertise, the reader is guided through their own journey to explore emotional and mental health. The positive effects of storytelling on mental health are recognized & this approach is excellently weaved throughout the book using the authors' own stories & those of other adults with CHC, families & professionals. Whilst aimed predominantly at supporting those living with CHC & their families/friends, it provides insight & recommendations that all CHC healthcare professionals should be encouraged to read. I loved reading it & will be referring to it again & again." - Dr. Kerry Gaskin, Associate Professor of Nursing, University of Worcester and Chairperson of the Congenital Cardiac Nurses Association (CCNA), United Kingdom
...
"Written with kindness & a sense of community this book offers gentle encouragement for people living with CHCs validating their experience in a world, & body, which may have presented many challenges. The background details how medical advances have increased survival for people with CHC. The authors explain, with great care, the personal & societal challenges of life as 'pioneering patients'. Their expert knowledge is evident, in their lived experience & psychological expertise. They explain the psychological impacts & evidence based coping mechanisms. Diversity of experience is thoughtfully weaved throughout. This book will be an important resource for people living with CHC, their families or anyone working in the healthcare system wanting to take a more psychologically informed approach to care." - Kylie Barclay, Health Policy Professional, United Kingdom
...
"A beautifully crafted journey through stories of adversity, medical procedures & cardiac events framed by stories of love, perseverance & hope. The authors draw on their lived experience of living well with a congenital heart condition & mental health training to discuss the psychological impact of growing up with a lifelong condition. It has important insights & evidence-based strategies for people living with a CHC & those who support them. As we become more aware of the need for psychologically informed care & how a child's experiences of medical care shape life, this book is a must read for those interested in a more trauma informed approach. 'Healing Hearts and Minds' is a wonderful achievement" - Professor Lucy Bray, Professor of Child Health Literacy, Edge Hill University & lead ISupport Collaboration
...
"Informative & thought-provoking. 'Patient voice' & 'lived experience' are buzzwords we often hear, yet this can be a tick-box exercise. This book gently but firmly challenges the simple notion people are 'fixed' when they leave hospital. This is not to deny the incredible developments in medical science rather, it's an acknowledgment that we need to support the whole person lifelong. Liza & Tracy have given voice to their experiences and, in doing so, will help to give voice to many others. Their writing offers a priceless combination of truly lived experience & professional expertise, representing a textbook for us all. For those affected by CHCs, clinicians & policymakers committed to providing truly holistic care." - Dr. James Cant, CEO, Resuscitation Council, United Kingdom
...
"Liza & Tracy have produced a toolkit for people living with a CHC, their loved ones & health professionals. Their insights gained through lived experience & professional roles have allowed them to develop a book with a unique perspective. As a healthcare professional this helped me consider how I can better support & meet the needs of people with a CHC, taking a truly holistic approach to their care. Thanks to the authors for their dedication in providing the first toolkit to support the mental health of others with a CHC, for showing them a path already traveled & how to navigate it. I encourage HCPs involved in the care of people with CHC to read this book to support their development." - Maggie Simpson, ACHD Specialist Nurse, Chair British Adult Congenital Cardiac Nursing Association (BCCNA) & Scottish Heart Failure Nurse Forum (SHFNF)
...
"This book is a unique contribution to the world of congenital heart conditions (CHC)-serving both patients and families as well as the clinical care team. Tracy Livecchi & Dr. Liza Morton take the reader on a journey to explore psychological challenges, hopes, and disappointments into the new "normalcy" of CHC patients. The book is motivating, inspiring, & helpful. For congenital heart condition patients & providers this book is a must." - Dr. Dan G. Halpern, MD, Director, Adult Congenital Heart Disease Program, Associate Professor of Medicine, NYU Grossman School of Medicine & NYU Langone Health
...
"As an adult patient with a congenital heart condition (CHC), I have read many books on the topic. This book, however, provided insights & help beyond so many of the others because both of the authors have CHCs & have personally faced the same challenges that I have. I knew they 'got me.' The unique combination of being patients & healthcare professionals provides the authenticity, credibility, & help that simply cannot be achieved in any other way. What I found most beneficial (and healing) about this book is that the authors recognize the differences between adults who were born in the 50s, 60s, 70s, & today—& that these differences can be addressed. The authors' insights & desire (and ability) to help clearly come from the heart. Thank you!" - Rick Puder, CHC lived experience & advocate, United States
...
"This book is a wonderful resource that is greatly needed in the CHC patient & family community. I know it would have helped me at a time in my adult life when I had one medical crisis on top of another. At that time, I reached out for therapy but could not find a therapist who 'got' me. I felt so alone & unheard." - Paula Miller, Senior Education Manager, ACHD (Adult Congenital Heart Association), United States
...
"Congenital heart disease (CHD) is a physical condition where the heart has developed abnormalities prior to birth. The amazing success in survival is due to the medical advances in making corrections or adjustments to the physical condition. Particularly in adults, while there are physical symptoms, the effect on their lives tends to be much greater from psychological symptoms. These psychological symptoms are very dependent on the individual, what their lives consist of, and how they can cope with them. The future advances in how to live as full & meaningful life as possible, will be the management of coping well & this book fills a significant gap by offering extensive support, strategies, & techniques to this end." - Michael Cumper, President of Somerville Heart Foundation, United Kingdom / CHC Lived Experience
...
"A psychologically illuminating book focused on congenital heart conditions, life-extending recent advances in medicine & surgery, & the associated health & psychological experiences faced by many. The authors write with an uplifting & inspiring sense of courage, optimism, love, & sensitivity, sharing a rich treasure trove of professional psychological knowledge & lived experience. A wonderful, much needed specialist psychology resource to support health & well-being for the congenital heart family around the world." - Dr. Anne-Marie Doyle BSc MSc MA DClinPy Consultant Clinical Psychologist, Adult Congenital Heart Service, Royal Brompton Hospital, London
...
"A book full of compassion & hard-won insight, wisdom, & practical strategies for healing, I sincerely hope this book becomes the classic it deserves to be. While it may focus on CHC, there are many other planets of chronic disease that could readily be brought into its orbits of enlightened understanding & gifts of tender self-care." - Brian Dolan OBE, FFNMRCSI, FRSA, RMN, RGN, Founder of #endpjparalysis global movement, Director, Health Service 360, Honorary Professor of Leadership in Healthcare, University of Salford
...
"I guess it took two women who were born with CHCs & who went into the mental health field for us to finally get a book discussing issues affecting CHC families in a gestalt manner. Now we can move beyond mere survival to having all members of the CHC community living our best lives. This book addresses these issues & gives coping strategies that are helpful not only for the patients but also for the family members. Thank you for validating the feelings I've been having for over two decades! I loved the quotes from members of the CHC community & the case studies. It made the book more digestible & relatable." - Anna Jaworski, Owner and founder, Baby Hearts Press, Host, Heart to Heart with Anna, CEO of Hearts Unite The Globe, Parent of a son with CHC
...
"Tracy Livecchi & Dr Morton have created an essential road map to guide congenital heart survivors as they negotiate the life-long challenges of their condition. Compassionate, & wise, it offers the kind of advice that is deeply informed by their own CHD journey, as well as by their many years caring for the mental health needs of their community. Most impressive is their focus on wellness, which they argue can be achieved even in the face of severe health challenges. The authors offer concrete steps that every patient can take to embrace their lives with their own unique heart." - Amy Verstappen, President, Global Alliance for Rheumatic and Congenital Hearts, CHC lived experience
...
"The complexities of mental health issues among patients with congenital heart disease (CHD) are unlike any other. Tracy & Liza are not only well-respected therapists in our community, but as CHD patients, they have thoughtfully conveyed our challenges first-hand. This comprehensive resource for patients, their loved ones, & medical providers is a very informative read!" - Lena Morsch, Founder of Zipper Sisters: Women with Congenital Heart Disease, CHC Lived Experience, United States
...
"This is the book for which we've all been waiting. With warmth, respect, & compassion from two highly regarded authors with lived experiences as well as professional training & expertise, Morton & Livecchi offer an incredible how-to guide for adults everywhere coping with congenital heart conditions. I highly recommend this book for everyone in the congenital heart community-patients, families, & health care professionals." - Dr. Adrienne Kovacs, Clinical & Health Psychologist, Equilibria Psychological Health, Toronto, Canada
...
"Tracy Livecchi & Dr. Liza Morton have harnessed their individualized training & experiences both as mental health professionals as well as adults living with congenital heart conditions (CHCs) to create a first-of-its-kind, easily readable, focused, informative, & entertaining primer & guide to awareness of, & release from, the global suffering that commonly occurs in the setting of a lifelong medical condition. We are grateful to Liza & Tracy for their wisdom in calling this out loud, filling a void for the benefit of our patients, their families, & for our colleagues." - Founding Director Boston Adult Congenital Heart (BACH) & Pulmonary Hypertension Program, Laurence J. Sloss, MD Chair in Cardiology, Associate Professor of Medicine, Harvard Medical School, & Dorothy Pearson, Vice President Global Alliance of Rheumatic & Congenital Hearts, & Former Senior Physician's Assistant, Boston Adult Congenital Heart Disease Center (BACH)
...
"This carefully written & touching book takes a novel approach to CHCs. Written for a lay perspective, underpinned by psychotherapy expertise, the reader is guided through their own journey to explore emotional and mental health. The positive effects of storytelling on mental health are recognized & this approach is excellently weaved throughout the book using the authors' own stories & those of other adults with CHC, families & professionals. Whilst aimed predominantly at supporting those living with CHC & their families/friends, it provides insight & recommendations that all CHC healthcare professionals should be encouraged to read. I loved reading it & will be referring to it again & again." - Dr. Kerry Gaskin, Associate Professor of Nursing, University of Worcester and Chairperson of the Congenital Cardiac Nurses Association (CCNA), United Kingdom
...
"Written with kindness & a sense of community this book offers gentle encouragement for people living with CHCs validating their experience in a world, & body, which may have presented many challenges. The background details how medical advances have increased survival for people with CHC. The authors explain, with great care, the personal & societal challenges of life as 'pioneering patients'. Their expert knowledge is evident, in their lived experience & psychological expertise. They explain the psychological impacts & evidence based coping mechanisms. Diversity of experience is thoughtfully weaved throughout. This book will be an important resource for people living with CHC, their families or anyone working in the healthcare system wanting to take a more psychologically informed approach to care." - Kylie Barclay, Health Policy Professional, United Kingdom
...
"A beautifully crafted journey through stories of adversity, medical procedures & cardiac events framed by stories of love, perseverance & hope. The authors draw on their lived experience of living well with a congenital heart condition & mental health training to discuss the psychological impact of growing up with a lifelong condition. It has important insights & evidence-based strategies for people living with a CHC & those who support them. As we become more aware of the need for psychologically informed care & how a child's experiences of medical care shape life, this book is a must read for those interested in a more trauma informed approach. 'Healing Hearts and Minds' is a wonderful achievement" - Professor Lucy Bray, Professor of Child Health Literacy, Edge Hill University & lead ISupport Collaboration
...
"Informative & thought-provoking. 'Patient voice' & 'lived experience' are buzzwords we often hear, yet this can be a tick-box exercise. This book gently but firmly challenges the simple notion people are 'fixed' when they leave hospital. This is not to deny the incredible developments in medical science rather, it's an acknowledgment that we need to support the whole person lifelong. Liza & Tracy have given voice to their experiences and, in doing so, will help to give voice to many others. Their writing offers a priceless combination of truly lived experience & professional expertise, representing a textbook for us all. For those affected by CHCs, clinicians & policymakers committed to providing truly holistic care." - Dr. James Cant, CEO, Resuscitation Council, United Kingdom
...
"Liza & Tracy have produced a toolkit for people living with a CHC, their loved ones & health professionals. Their insights gained through lived experience & professional roles have allowed them to develop a book with a unique perspective. As a healthcare professional this helped me consider how I can better support & meet the needs of people with a CHC, taking a truly holistic approach to their care. Thanks to the authors for their dedication in providing the first toolkit to support the mental health of others with a CHC, for showing them a path already traveled & how to navigate it. I encourage HCPs involved in the care of people with CHC to read this book to support their development." - Maggie Simpson, ACHD Specialist Nurse, Chair British Adult Congenital Cardiac Nursing Association (BCCNA) & Scottish Heart Failure Nurse Forum (SHFNF)
...
"This book is a unique contribution to the world of congenital heart conditions (CHC)-serving both patients and families as well as the clinical care team. Tracy Livecchi & Dr. Liza Morton take the reader on a journey to explore psychological challenges, hopes, and disappointments into the new "normalcy" of CHC patients. The book is motivating, inspiring, & helpful. For congenital heart condition patients & providers this book is a must." - Dr. Dan G. Halpern, MD, Director, Adult Congenital Heart Disease Program, Associate Professor of Medicine, NYU Grossman School of Medicine & NYU Langone Health
...
"As an adult patient with a congenital heart condition (CHC), I have read many books on the topic. This book, however, provided insights & help beyond so many of the others because both of the authors have CHCs & have personally faced the same challenges that I have. I knew they 'got me.' The unique combination of being patients & healthcare professionals provides the authenticity, credibility, & help that simply cannot be achieved in any other way. What I found most beneficial (and healing) about this book is that the authors recognize the differences between adults who were born in the 50s, 60s, 70s, & today—& that these differences can be addressed. The authors' insights & desire (and ability) to help clearly come from the heart. Thank you!" - Rick Puder, CHC lived experience & advocate, United States
...
"This book is a wonderful resource that is greatly needed in the CHC patient & family community. I know it would have helped me at a time in my adult life when I had one medical crisis on top of another. At that time, I reached out for therapy but could not find a therapist who 'got' me. I felt so alone & unheard." - Paula Miller, Senior Education Manager, ACHD (Adult Congenital Heart Association), United States
...
"Congenital heart disease (CHD) is a physical condition where the heart has developed abnormalities prior to birth. The amazing success in survival is due to the medical advances in making corrections or adjustments to the physical condition. Particularly in adults, while there are physical symptoms, the effect on their lives tends to be much greater from psychological symptoms. These psychological symptoms are very dependent on the individual, what their lives consist of, and how they can cope with them. The future advances in how to live as full & meaningful life as possible, will be the management of coping well & this book fills a significant gap by offering extensive support, strategies, & techniques to this end." - Michael Cumper, President of Somerville Heart Foundation, United Kingdom / CHC Lived Experience
...
"A psychologically illuminating book focused on congenital heart conditions, life-extending recent advances in medicine & surgery, & the associated health & psychological experiences faced by many. The authors write with an uplifting & inspiring sense of courage, optimism, love, & sensitivity, sharing a rich treasure trove of professional psychological knowledge & lived experience. A wonderful, much needed specialist psychology resource to support health & well-being for the congenital heart family around the world." - Dr. Anne-Marie Doyle BSc MSc MA DClinPy Consultant Clinical Psychologist, Adult Congenital Heart Service, Royal Brompton Hospital, London
...
"A book full of compassion & hard-won insight, wisdom, & practical strategies for healing, I sincerely hope this book becomes the classic it deserves to be. While it may focus on CHC, there are many other planets of chronic disease that could readily be brought into its orbits of enlightened understanding & gifts of tender self-care." - Brian Dolan OBE, FFNMRCSI, FRSA, RMN, RGN, Founder of #endpjparalysis global movement, Director, Health Service 360, Honorary Professor of Leadership in Healthcare, University of Salford
...
"I guess it took two women who were born with CHCs & who went into the mental health field for us to finally get a book discussing issues affecting CHC families in a gestalt manner. Now we can move beyond mere survival to having all members of the CHC community living our best lives. This book addresses these issues & gives coping strategies that are helpful not only for the patients but also for the family members. Thank you for validating the feelings I've been having for over two decades! I loved the quotes from members of the CHC community & the case studies. It made the book more digestible & relatable." - Anna Jaworski, Owner and founder, Baby Hearts Press, Host, Heart to Heart with Anna, CEO of Hearts Unite The Globe, Parent of a son with CHC
...
"Tracy Livecchi & Dr Morton have created an essential road map to guide congenital heart survivors as they negotiate the life-long challenges of their condition. Compassionate, & wise, it offers the kind of advice that is deeply informed by their own CHD journey, as well as by their many years caring for the mental health needs of their community. Most impressive is their focus on wellness, which they argue can be achieved even in the face of severe health challenges. The authors offer concrete steps that every patient can take to embrace their lives with their own unique heart." - Amy Verstappen, President, Global Alliance for Rheumatic and Congenital Hearts, CHC lived experience
...
"The complexities of mental health issues among patients with congenital heart disease (CHD) are unlike any other. Tracy & Liza are not only well-respected therapists in our community, but as CHD patients, they have thoughtfully conveyed our challenges first-hand. This comprehensive resource for patients, their loved ones, & medical providers is a very informative read!" - Lena Morsch, Founder of Zipper Sisters: Women with Congenital Heart Disease, CHC Lived Experience, United States
Get in touchDr Liza Morton
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