Congenital Heart Disease or Congenital Heart Defects?

I love working with ACHA as they advocate to change the landscape for those living with congenital heart defects—or is it congenital heart disease? Ugh. A few months ago, I spent an entire day asking countless patients, parents and professionals about whether I should refer to CHD as congenital heart disease or congenital heart defects in our advocacy documents. I hadn't thought about what a difference a word could make.

In the past, I have noticed that the government agencies usually used disease, but most doctors and parents used defect. I was struggling with how to cross that divide in advocating to our lawmakers. I was actually pleasantly surprised to learn that things are changing. From doctors to patients to parents, the majority of people I spoke with preferred disease.

I am excited that the reasoning why people chose disease suggests a real shift in thinking over the past couple of years. For many, including myself, heart defect implies a structural problem that can be fixed. In fact, after surgery, many people, professionals and families alike, use the term fixed or "repaired." This makes it sound like the defect is gone, problem solved.

However, with the improvements in treatment, people are living longer with a congenital heart problem. It is becoming clear that we are dealing with a lifelong disease, rather than a fixable defect. From neurological problems requiring early screening and intervention to adult onset heart complications, the baby born with a heart problem faces a lifetime of attention from a doctor trained in congenital heart disease.

This important message—the need for lifelong care—is much better reflected in the word disease.

So, disease it is. Here's how I am going to say it from now on: I am working to improve and prolong the lives of those with congenital heart disease because my son, born with a defect, lives with congenital heart disease.

I encourage you, as a person passionate about CHD, to consider this simple step representing a monumental change in thinking, and incorporate the word disease into your efforts.

Now, as for an alternative word for "repaired" … I'm open for discussion on that one!