Defining CHD

One of the most prominent debates in the congenital heart community is the definition of the acronym “CHD.” Let me preface this blog by stating that I recognize that your preference is deeply personal, and I don’t believe there is a right or wrong answer to this debate. Whatever side of the debate you fall upon, that is what is best for you, and I completely respect your choice.

The first challenge is that “CHD” is an acronym that is also used for the term “congestive heart disease,” which is an ambiguous cardiology term not used as much these days, but most often associated with acquired heart conditions.

Acquired heart disease is our nemesis, for many reasons, but mainly because we often get inappropriately lumped into this group.

I’ll never forget the years I was lost to congenital cardiology care and then was seen with a general cardiologist. I’d receive phone calls from well-meaning nurses wanting to discuss my lifestyle choice and modifiable factors for my heart disease. I’d receive smoking cessation, diabetes, and obesity pamphlets in the mail despite the fact that I was a non-smoker, non-diabetic, and an underweight individual. Many times, I was asked when my myocardial infarction (heart attack) had occurred as I checked in for my appointments.

This pervasive misconception created a huge trust divide between me and my healthcare providers. If they couldn’t understand the very basic concept that my heart condition was something I was born with, and that no amount of lifestyle modifications could reverse my condition, then how could I trust them to know when my pulmonary valve would need replacement or how to get me through pregnancy? It’s a part of my journey that has left an indelible mark on how I approach my own care and the care I deliver to my patients.

I think, for our purposes, we all agree that the “C” and the “H” in “CHD” stands for “congenital heart,” and the debate lies in the definition of the “D.” Primarily I’ve seen the debate hinder on whether or not the “D” stands for “defects” or “disease.” This is a summary of the debate I’ve witnessed from my interactions with the congenital heart community, but it certainly doesn’t encompass all opinions:

Defects

• Those who prefer the term “defects” tend to find that this term helps drive home the point that our heart conditions are something we’re born with. Defects, by nature, are not typically acquired, and helps emphasize that we don’t belong in the acquired heart conditions category.
• Those who dislike the term “defects” are concerned that it misguides people to think that the condition can be fixed through surgery—a misconception that has greatly harmed many in our community, myself included.

Disease

• Those who prefer the term “disease” like how it encompasses both the anatomical (structural) issues and the physiological (functional) issues found with congenital heart conditions. It ultimately highlights the message that we need specialized lifelong care.
• Those who dislike “disease” feel it doesn’t capture those who feel well and thrive despite their congenital heart condition and are concerned about it perpetuating our inappropriate inclusion with acquired heart disease.

So, what do I, an ACHD nurse practitioner and an ACHD patient, define the “D” in “CHD” as?

I define “CHD” with both “defects” and “disease.” For me, it’s all about context.

Defects are the anatomical (structural) abnormalities in our hearts that we were born with and the diagnosis we carry with us throughout life. If our congenital heart journey was a tree, the congenital heart defects are the roots of the tree.

Disease is the physiological (functional) sequelae of being born with the defects, and the way those defects and any interventions impact the function of our heart. Not everyone with CHD has had surgery. In my tree metaphor, the congenital heart disease would be our tree trunk and branches.

From a patient perspective: I was born with five congenital heart defects and I’m living with congenital heart disease.

As an ACHD nurse practitioner, when I discuss specific diagnoses I use the term defects, and when I discuss our community, my program, or the organizations I work with, I use the term “disease” because I feel it’s a more inclusive term for the various journeys of the individuals I represent and advocate for.

(Side note: I tell professional colleagues outside of my clinical focus that I work in the field of “congenital heart cardiology” and just leave the “D” completely out of it.)

Individually, we can make whatever decision we feel most comfortable with, but we all have to recognize that organizations and medical communities strive to represent us all. As with any polarized debate, you’ll never make everyone happy.

William Shakespeare said “What’s in a name? That which we call a rose by any other name would smell as sweet.” Regardless of what term you use, or I use, or ACHA uses, remember that we’re all on the same team, all striving for similar goals, and all want clear and meaningful representation for our community.