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Anxiety

What Everyone Needs to Know About Congenital Heart Disease

People with CHD are at a higher risk of developing mental health conditions.

Key points

  • A baby is born with a congenital heart condition every 15 minutes in the US.
  • CHD is 30 times more common than cystic fibrosis and 50 times more common than childhood cancer.
  • Congenital heart disease is not the same as coronary artery disease.

There is a good chance that you or someone you know is living with congenital heart disease (CHD). But for some reason, this is a medical community that most people don’t know a lot about. The Centers for Disease Control estimate that a baby is born with a congenital heart condition every 15 minutes in the US. As a woman living with a heart condition from birth, I know only too well what it feels like to be a part of a very large and rapidly growing population that desperately needs to be given a voice. Here are some key takeaways for everyone to know about this hidden yet growing medical community.

1. Congenital heart disease is not the same as coronary artery disease.

Coronary artery disease (CAD) is a condition that develops or is acquired over time. CAD can often be linked to diet, cholesterol, age, and lifestyle. Alternatively, congenital heart disease is an anatomical heart condition that develops in utero. It is often, but not always, diagnosed at birth. Each of these conditions requires treatment from a different type of specialist. Most “regular” cardiologists are not trained to properly treat those of us with a congenital heart condition. Those with CHD require lifelong, specialized care by a cardiologist specially trained in congenital cardiology.

2. CHD is the most common birth defect worldwide.

It is estimated that nearly 1 percent of all babies are born with a heart condition, and CHD is attributed to ⅓ of all major congenital anomalies. Despite significant medical and surgical advances in the mid-to-late 20th century, CHDs continue to be the leading cause of birth-related deaths. It is estimated that there are approximately 2.4 million people living in the US with CHD. About 1 million of them are children under the age of 18.

3. There is no cure for CHD.

The CHD population is heterogeneous, and it includes individuals with a variety of heart defects that vary in required treatment, severity, and prognosis. CHD is incurable, leading to a growing number of adults living with a heart condition for their entire lives, from “cradle to grave.” Even though international guidelines recommend that individuals with CHD receive lifelong specialist care, astonishingly, the Adult Congenital Heart Association estimates that only about 10 percent of adults receive the care that they require. Without this recommended care, people with CHD are at a much higher risk of developing more serious cardiac problems and a worsening of symptoms, and they are at a higher risk of heart failure and premature death.

4. Many experience medical trauma.

While each individual experience is different, many children and adults with CHD have to cope with frequent and unexpected hospitalization, repeated surgeries, ongoing physical symptoms, routine exposure to invasive procedures, and the possible implantation of cardiac devices such as pacemakers or cardioverter defibrillators. For many, these repeated events can feel relentless, resulting in ongoing or intermittent worry and fear which can sometimes trigger a wide range of responses, including posttraumatic stress, depression, and anxiety.

5. There is a higher risk of developing mental health difficulties.

Individuals with CHD must learn to cope with medically related challenges from birth, while also dealing with the typical, everyday “normal" life stressors (work, finances). Challenges related to CHD can include scarring, feeling different from peers, medical trauma, feelings of grief and loss, impacted relationships, lowered self-esteem, interrupted education and employment due to hospitalizations, and discrimination. These adverse life experiences can understandably put us at a higher risk of developing mental health issues. Studies have shown that 50 percent of individuals with CHD had a lifetime prevalence of depression, anxiety, or post traumatic stress (Kovacs), which is more than double the general population (Stewart). Sadly, it has also been found that there is an enormous lack of mental health resources in this community.

6. Public awareness remains poor.

According to the non-profit organization Conquering CHD, CHD is 30 times more common than cystic fibrosis and 50 times more common than childhood cancer. Despite these statistics, however, individuals with CHD continue to be a “hidden population,” and resources and support are lacking.

It is important to note that every individual is different, and not everyone will have the same experience or journey with their CHD. On a positive note, studies have found that many people with CHD are quite resilient, and many are leading happy and productive lives. Many have reported that the medical adversity they experienced helped them to develop a deeper appreciation for life, renewed priorities, and more meaningful relationships.

Individuals with CHD are everywhere, but since you may not always see our scars, you may not realize it. We could be the cashier who rang you up at the grocery store the other day, your neighbor, your doctor, or even your new friend. Just by reading this post, you are helping to shine a light on our diverse and very special medical community. Increased awareness is the first step to helping us to obtain the needed resources and support that we need to thrive despite our lifelong heart conditions.

References

Kovacs, A. H., A. S. Saidi, E. A. Kuhl, et al. 2009. "Depression and anxiety in adult congenital heart disease: Predicots and prevalence." International Journal of Cardiology 137: 158-164.

Stewart, J. C., and B. L. Rollman. 2014. "Optimizing approaches to addressing depression in cardiac patients: A comment on O'Neil et al." Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine 28 (2): 142-144.

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