General Articles

*Watch the webinar  - how to cope holistically with congenital heart *disease & other chronic illnesses*

You both have backgrounds in mental health. What brought you to focus on CHD?

In addition to being mental health practitioners, we are both first-generation ‘patient pioneers’ who have been living with a heart condition from birth.  As such, we are aware of the gap in psychological support available to members of the patient population. This has come from our personal experiences, healthcare activism, clinical practice and research. 

What is CHD?

Congenital heart disease (CHD) refers to any heart condition from birth.  It is the most common birth defect, accounting for a third of all congenital conditions. The CHD population includes people with a variety of incurable heart defects which vary in severity and prognosis.  An estimated 12 million people have CHD globally; a growing, hidden population who often struggle to access the lifelong, specialist cardiac care that is recommended.

Why has having personal experiences with congenital heart disease been important for writing your new book?

We believe that our lived experience gives us a unique perspective and deeper understanding of the impact of living with a congenital heart condition. We also understand that everyone’s experience is different, this is why real-life testimonials are included throughout the book to foster a sense of community, diversity and shared experience.

Have you seen increasing research happen around CHD? What has this meant for treatment?

Thanks to medical and surgical advances, survival into adulthood for babies born with a heart condition has improved by seventy-five percent since the 1940s.  This is a huge success story of modern medicine.  However, so much has changed so quickly, with most of the focus being on survival.  Attention to the psychosocial impact of living with a serious medical condition has not kept up and is only recently being recognised.  We believe there needs to be more research and resources that need to be made available in an accessible way to people living with CHD and their loved ones, which is one of the main motivations for our book.

Why is being able to self-manage CHD so important? What are your top tips?

Self-management strategies can enhance resilience, and help people cope with physical symptoms, medical emergencies, hospitalisation and the global COVID-19 pandemic.  In our book, we talk about the importance of proactively managing your baseline stress. Some of our tips for doing so include:

1. Taking care of yourself physically through diet, hydration, getting enough physical exercise, and making sure to get enough sleep.
2. Making sure to put a plan in place for self-care is essential to managing any chronic illness.
3. Becoming a patient expert is important. This means that you can communicate effectively with your healthcare team, build a supportive social network, manage distress and cope with difficult feelings, deal with hospital appointments and procedures, self-compassion and techniques to manage anxiety.  

What challenges - both physical and social etc - can CHD cause?

CHD can impact every area of life. It creates physical limitations from childhood and the need for invasive medical interventions throughout life.  It can impact relationships, education, finances, self-esteem and social inclusion. It can also impact your relationships and life choices such as having and raising a family.  Lifetime prevalence of anxiety, depression and post-traumatic stress is as high as fifty percent, much higher than the general population.  

What is the biggest thing you have learnt about being affected by the condition?

In our book we also consider the ‘gifts of CHD’ such as post-traumatic growth, finding meaning and positive adaptation. We learned that there are protective factors, which can encourage resilience, an important factor in helping us to overcome and recover from adversity, stressful situations, and trauma.

What are your top resources for understanding CHD?

The Somerville Foundation, UK

The Adult Congenital Heart Association, US based