What it's like to live with the lifelong condition congenital heart disease
What is a congenital heart disease? To coincide with CHD Awareness Week, Tracy Livecchi, licenced clinical social worker and co-author of Healing Hearts & Minds: A holistic approach to coping well with congenital heart disease, lets us know.
According to the British Heart Foundation, approximately 13 babies are diagnosed with a congenital heart condition (CHD) each day in the UK. That means the chances are good that you or someone you know is living with a CHD. However, this is a medical community that most people don’t know a lot about. As an individual living with CHD, I know only too well what it feels like to be a part of a hidden population that desperately needs to be given a voice. Below are 7 important aspects of living with a lifelong heart condition.
1. CHD is the number one birth defect worldwide
Nearly 1% of all babies are born with a heart condition making this the most common birth defect worldwide.
"CHD is the most common birth defect and the leading cause of birth-related deaths"
The good news is that there have been significant medical and surgical advances since the 1940s, which have improved the chances of survival for infants born with CHD by 70 per cent. Despite this enormous success, however, CHDs continue to be the leading cause of birth-related deaths. It is estimated that there are nearly 12 million people living with CHD globally.
2. Congenital heart disease is not coronary artery disease
Coronary artery disease is a condition that is acquired or developed over time. It is a condition that can often be linked to age, lifestyle, and diet. Alternatively, congenital heart disease is an anatomical heart defect which develops in-utero, or before a baby is born. It is often diagnosed at birth, but sometimes missed until later in life.
CHD is a condition that will last all your life. Photo: Rattankun Thongbun
3. CHD is not curable, and it requires lifelong, specialised cardiac care
CHD is incurable, leading to a growing number of adults living with a heart condition from "cradle to grave". CHD includes individuals with a variety of heart defects, which vary in treatment, severity and prognosis. Even though the guidelines recommend that adults with CHD should receive specialist lifelong care, a large percentage of us remain “lost” to care.
Alarmingly, the USA’s Adult Congenital Heart Association estimates that only ten per cent of adults with CHD receive the recommended care that they require. Without this healthcare provision, people with CHD are at a much higher risk of having more serious cardiac problems, a worsening of symptoms and are at a higher risk of premature death.
4. Many of us experience a lifetime of medical trauma
Of course, each individual experience is different, however, many children and adults with CHD have to cope with repeated and unexpected hospitalisation and surgeries, uncomfortable physical symptoms, routine exposure to a range of invasive procedures, and the implantation of cardiac devices such as pacemakers or cardioverter defibrillators.
"Many children and adults with CHD have to cope with repeated hospitalisation and surgeries, resulting in a sense of life threat"
For many these repeated events can feel relentless, resulting in a sense of life threat and sometimes trigger a wide range of responses, including posttraumatic stress.
5. Risk of mental health issues is more than double the general population
Individuals with CHD not only have “normal” everyday stressors, but we also have a layer of medically related challenges. These unique challenges can put us at a higher risk of developing mental health issues. Studies have shown that 50 per cent of individuals with CHD met the diagnostic criteria for depression, anxiety or posttraumatic stress, which is more than double the general population.
It has also been found that 69 per cent of those individuals were not engaged in any type of mental health support. Sadly, there is a huge gap in emotional and psychological care for this community.
Many in the CHD community feels left behind by mental health support. Photo: seb_ra
6. We are a medical community left behind
We are a large and rapidly growing, hidden population, and many of us are not receiving the attention, resources, or support that we need.
"We are not receiving the attention or support needed, despite CHD being more common than cystic fibrosis and childhood cancer"
This is surprising since according to the non-profit organisation Conquering CHD, CHD is 30 times more common than cystic fibrosis and 50 times more common than childhood cancer. Despite these statistics, public awareness remains poor.
7. There are many hidden “gifts” of having CHD
Tracy Livecchi lives with CHD
The good news is that despite the challenges listed above, many individuals with CHD lead very happy and satisfying lives. The CHD population has exceeded the expectations of many, not just in terms of physical health, but also by demonstrating enormous resilience.
Studies over the years have shown that many with CHD report having a good quality of life, and that many are thriving despite their medical condition. Other unexpected “gifts” that have been reported include the development of more meaningful relationships, changed life priorities, increased personal strength and newfound spiritual development.
Just by taking an interest and reading this article you are helping us to increase public awareness about this issue, which is desperately needed. By shining a light on CHD and its associated challenges we hope to bring additional education, support, resources, and an overall sense of validation to those of us born with a lifelong heart condition.
Tracy Livecchi and Dr Liza Morton are the co-authors of new book ‘Healing Hearts and Minds: A holistic approach to coping well with congenital heart disease’, published by Oxford University Press.
Banner photo: megaflopp
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