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The Terminology Debate

Nov 16

Posted by: ACHA
11/16/2012 11:33 AM  RssIcon

By Ken Woodhouse

CHD: Congenital heart disease or congenital heart defect? Over the past year, as I have gotten more active within the CHD community, I have been asking this question more and more—both of myself and of other patients and advocates I meet. I often see these two terms used interchangeably, and perhaps I am just focusing too much on semantics. Perhaps it’s because I used to work as an editor and proofreader for a publishing company that I naturally discover inconsistencies in the written word. Maybe this is just a moot point and not worthy of a blog entry. Maybe not.

When I began acclimating myself to this new-to-me world of adult CHD survivors last year, I decided to do a bit of research. The American Heart Association recognizes that the terms are used interchangeably but states that defect is more accurate. According to AHA, “The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don’t develop normally before birth.” Using this as an initial reference point, I found myself consciously trying to refer to my congenital heart defect rather than my disease. But in my experience, I’ve discovered that disease seems to be the much more commonly used term within the CHD community.

When I posed this question to some people I met at Lobby Day back in March, one woman described the distinction as she saw it: Babies are born with a heart defect but they grow up having a disease, a lifelong condition that can be treated but not cured. In her mind, using the term defect implied that CHD is something that can be fixed and then forgotten about. Since that conversation, I have often found myself using the same explanation when talking to others about CHD.

Perhaps it’s because I was fortunate to grow up never really having to think of myself as a heart patient that I was reluctant to adopt the disease term initially. For a long time, I saw my own CHD as a defect that was corrected with surgery when I was eight months old. But getting slapped back into reality after I fell off my bike last year and being “reintroduced” to my CHD seems to have caused me to be much less stringent on the terminology.

I now find myself using the terms somewhat interchangeably, but I still think the discussion is intriguing. I would be interested in hearing other people’s thoughts about it, whether or not they have even considered it before. While I would guess there are some people who do not think too much about the terminology, I would bet that some others have strong opinions one way or the other. If you are so inclined, I invite you to post a comment in response to this blog entry and share your own thoughts. If nothing else, I think this (like any) discussion about CHD has the very real potential to increase awareness and knowledge about the disease/defects and the reality facing those of us who live with CHD each and every day.

Ken Woodhouse was born in 1981 with tetralogy of Fallot and had his first (and, so far, only) open heart surgery at the age of eight months. He is an avid cyclist and aspiring runner, having completed both century and multi-day bike rides across the country, as well as his first half marathon in September 2012. Ken writes his own blog about living a healthy and active life with CHD.

Copyright ©2012 ACHA

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15 comment(s) so far...


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Re: The Terminology Debate

I spent years saying 'defect' and only recently started hearing others use 'disease'.

I think using disease is confusing because most of my friends already have a tough time understanding that I don't have "heart disease" with clogged arteries and such. So it's easier to say - no - it's not that kind of disease, its actually a 'birth defect', thus defect.

And no Friends, I can't go to your cardiologist you love, I have to have an even more specialized cardiologist - because my biggest heart concern is not like yours. I'm not worried about having a heart attack due to heart disease. :-)



By Debra on   11/16/2012 2:53 PM
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Re: The Terminology Debate

I prefer the word "defect" because for the vast majority of people, congenital heart disease sounds too much like congestive heart disease. People sometimes hear what they expect to hear, and anything that makes congenital heart problems distinguishable from acquired heart disease is better in my book.

By Judy on   11/16/2012 3:40 PM
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Re: The Terminology Debate

I prefer the word "defect" because for the vast majority of people, congenital heart disease sounds too much like congestive heart disease. People sometimes hear what they expect to hear, and anything that makes congenital heart problems distinguishable from acquired heart disease is better in my book.

By Judy on   11/16/2012 8:42 PM
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Re: The Terminology Debate

I think it is important to make the distinction. In addition to the reasons the others posted, I think all participants in the medical field need to hear "defect" over "disease" to help them better understand our situations. I think it changes how we are viewed and thus could alter the care and support we receive.

After my second open heart surgery (at 23), while still in the hospital, I was treated as though the way I had lived my life had caused me to need surgery. I had to see a nutritionist before being released and was given a diet to follow--the same sheet they gave to people after having a heart attack. (I was actually scolded for eating two bites of a Frosty, the first edible food I'd been offered in three days!) Having always been healthy and in decent shape, it was a bit offensive being treated as though I had made poor life choices rather than been born with a defective pulmonary valve.

(In addition, I'm a pretty big nerd and am passionate about words.)

By Laura B. on   11/16/2012 8:42 PM
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Re: The Terminology Debate

I grew up (in the '50's and '60's) with my CHD referred to as my "heart condition".

I have a knee-jerk negative reaction to the word "defect" because I once heard myself described as a "defective child" (because of the heart condition, of course). I don't think I've ever shaken that self-image, or the thought that came to me immediately after hearing the comment: "You can take a defective toaster back to the store, but my Mom and Dad are stuck with me".

Still, "defect" is probably the more accurate word.

By Nancy J Doman on   11/18/2012 3:56 PM
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Re: The Terminology Debate

I was born with tetralogy of Fallot in 1948, and have always considered it a heart "condition". I think of a "disease" like the flu or chickenpox; something that can be cured. I think of a defect as something that can be fixed.
A condition is something that just is, it can get better but it's always there.

By Maryanne Herbert on   11/18/2012 3:56 PM
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Re: The Terminology Debate

I prefer "defect" as disease to me implies that I some how made some bad choices in life to acquire heart disease and no I did not make any choices to be born with a heart defect. I have to correct people when I hear them say I have a congenital heart disease it is not a disease especially when my heart has not functioned correctly since birth.
I feel strongly about this subject because I have had 5 open heart surgeries and I go thru pacemakers about every 5-6 years generally.
I get treated differently by my co-workers especially when someone else has heart issues after a life time of rice, pasta and just general bad diet. They have a disease and in these people maybe it could have been prevented maybe not but the CHDefect's not so much.
The heart after all is the first major organ developed in the first few weeks of pregnancy and the word defect to me means malformed.

By Catherine McNamara on   11/18/2012 3:57 PM
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Re: The Terminology Debate

I also prefer the term defect. So that it doesn't get confused with heart disease like clogged arteries. It lets people know I was born with it.

By TaShana Taylor on   11/18/2012 3:57 PM
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Re: The Terminology Debate

"Defect" is the one in my vocabulary. I had a similar experience as Laura B's...I had my ToF repair at age 20 and was treated as if i had clogged arteries. I too felt a bit offended when other elderly patients would say how shocked they were to see someone that could be their grandson with heart surgery!!!.

By Tony on   11/18/2012 3:57 PM
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Re: The Terminology Debate

I appreciate your thoughts about this topic. I was born with ventricular and atrial septal defects, corrected surgically at 3 yrs old. This influences our perception of our condition as "defects" I believe, as you stated. I always defined it as defects.

When I needed a pacemaker for complete heart block several years ago, sitting in the ER, the nurse misunderstood what the heart block meant, and told me they would let me know if I had had a heart attack. At no time did they believe I had a heart attack. Anyway, it's another issue that comes up when defining one's congenital heart disease/defect. people do make assumptions when you say heart disease. even nurses.

By Lin on   11/18/2012 3:57 PM
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Re: The Terminology Debate

I agree: we have a defect (or defects), just as others have defects, like maybe one leg shorter than another, for instance.
Disease implies pathology or germs/bacteria.
Of course, along the way we can develop a disease. For example, pericarditis and endocarditis are diseases.
Stick with defect, Champ!
Connie

By Connie on   11/18/2012 3:58 PM
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Re: The Terminology Debate

I think it is important to make the distinction. In addition to the reasons the others posted, I think all participants in the medical field need to hear "defect" over "disease" to help them better understand our situations. I think it changes how we are viewed and thus could alter the care and support we receive.

After my second open heart surgery (at 23), while still in the hospital, I was treated as though the way I had lived my life had caused me to need surgery. I had to see a nutritionist before being released and was given a diet to follow--the same sheet they gave to people after having a heart attack. (I was actually scolded for eating two bites of a Frosty, the first edible food I'd been offered in three days!) Having always been healthy and in decent shape, it was a bit offensive being treated as though I had made poor life choices rather than been born with a defective pulmonary valve.

(In addition, I'm a pretty big nerd and am passionate about words.)

By Laura B. on   11/18/2012 3:58 PM
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Re: The Terminology Debate

I like to use the word defect, because people understand it better.when I have to explain what my heart problem is,they seem to understand it better.I was born with a Congenital heart defect. My Great Arteries were switched, the surgeon had to switch them back.My right side of my heart does all the work to keep me going. I had a Defibrillator/Pacemaker put in a year ago. My heart is getting tired of working,so this is where I am at in my life.That is why I call it a defect.

By Stacy Carey on   11/19/2012 1:00 PM
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Re: The Terminology Debate

Is it something you can catch? Well, it is not a disease. Were you born with the abnormalities? Well, it is a defect.

Plain. Simple. No need for debate.

By Laurie B on   11/21/2012 8:28 AM
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Re: The Terminology Debate

I use them interchangeably to meet my needs. Usually I will say that I was born with a congenital heart defect but that I have congenital heart disease. Growing up I was always told I had heart disease. It wasn't until I became and adult and started taking care of myself that I learned that the heart defect causes my heart to be diseased/sick. My real challenge is getting people to understand my CHD and that there are so many CHD patients out there, both adult and child and that we need a lot of funding to help find solutions for our sick hearts.

By Liene T on   11/27/2012 2:40 PM

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