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Congenital Heart Disease or Congenital Heart Defects?

Jun 28

Posted by: ACHA
6/28/2011 9:23 AM  RssIcon

By Amy Basken
ACHA Advocacy Coordinator

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!

Amy Basken, ACHA Advocacy Coordinator, has a background in grassroots advocacy as the National Advocacy Coordinator for Mended Little Hearts. As mother of Nicholas, congenital heart defect survivor, Amy became an active participant in grassroots advocacy for the congenital heart community early on, at both the local and national level. Her experience includes coordinating Washington D.C. Lobby events, in-district visits and several media contacts, designing and managing grassroots action activities, and grassroots advocate training and development.

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8 comment(s) so far...


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Re: Congenital Heart Disease or Congenital Heart Defects?

I have always used the term disease, because having a heart defect is a long term chronic illness that is neither cured nor fixed. The defect may be "fixed" but there will always be a need for follow up care as complications may arise short or long term.

By joanne on   6/28/2011 9:56 AM
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Re: Congenital Heart Disease or Congenital Heart Defects?

I tend to shorten it all and just say 'heart problem'. I would tend to go with defect over disease, because I don't really consider what I have to be a disease. When I was younger, I didn't care for defect because, well, being a teenager, who wants to feel defective? Now it doesn't matter, but I still say 'heart problem' unless asked to give more details.

By Aubrey on   6/28/2011 10:11 AM
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Re: Congenital Heart Disease or Congenital Heart Defects?

Interesting - I never thought about it that way. I usually say that I have a heart condition and that (or because) I was born with a heart defect.

By Alissa on   6/28/2011 11:48 AM
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Re: Congenital Heart Disease or Congenital Heart Defects?

I prefer to say defect because my son's heart is in good shape it just wasn't put together correctly. I think of a disease as something that is progressive or deteriorating which his heart isn't.

By Alexis on   6/29/2011 9:40 AM
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Re: Congenital Heart Disease or Congenital Heart Defects?

These are really good suggestions. I use both defect and disease, but with specificity when I do. My specific heart problem's medical term is Ventricular Septal Defect (with Eisenmenger's), but I know it's a lot more complicated than just a defect. Even though I was born with a congenital heart defect it's been a life long disease even during the 17 years it went undetected. I used to feel if I had been repaired when I was born that I would have had less problems, but now I realize that even if I had been repaired I wouldn't be free of congenital heart disease.

By Stephie on   6/30/2011 6:36 PM
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Re: Congenital Heart Disease or Congenital Heart Defects?

It will be interesting to hear the comments. Our program is called the Program for Adult Congenital Heart Disease (PACHD) so we use disease typically, but when referring to a patient's condition I often now do not use repaired as it might imply they are "fixed, over, done" with thinking about congenital heart disease as a lifelong condition for which their is a "maintenance crew" - us to keep watch over the operated condition. So typically I would refer to the patient's condition as Operated Tetralogy of Fallot to give one example... Interested to know how patients feel about it all...

By MJNickolaus on   7/12/2011 4:37 PM
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Re: Congenital Heart Disease or Congenital Heart Defects?

The use of the word "disease" to describe CHD is misleading and detrimental to those of us who have CHD.

Diseases can be acquired and are usually, as noted above, progressive and deteriorating. More importantly society views diseases with a "blame the victim" attitude. If someone develops lung cancer, we often believe that person simply smoked too much; if someone has AIDS, we often believe they engaged in high risk sexual behavior; or if a person develops cirrhosis of the liver, the person simply drank too much during their lifetime.

Diseases are somehow the consequence of having lived a less than honorable life and were brought on by the actions of the person the disease is attacking. While medical science may not think this way, society does. Defects are impersonal while diseases often become synonymous with the person themselves.

I agree that there are shortcomings with the word "defect" as it may imply to the lay person a defect can be corrected. Almost 50 years ago my cardiologist wrote on my medical records my aortic stenosis had been "corrected". No one ever took this to mean I was not to receive special medical observation for the duration of my life or that my cardiologic function was equivalent to someone who had had never had aortic stenosis.

Those of us involved with CHD on a daily basis need to be aware of the limitations of corrective surgery and the ongoing discoveries being made suggesting some “corrected” CHDs, such as Coarctation of the Aorta, can actually redevelop over time. I would prefer those of us within the CHD community educate themselves to these limitations than be viewed by society as having a medical condition suggesting something about my personal character.

I vote for “defect”.

By Scott Harvie on   7/16/2011 10:42 AM
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Re: Congenital Heart Disease or Congenital Heart Defects?

At 65 years of age, I call my coarctation of the aorta, my coacrtation repair, and my bicyspid aortic valve, unpaired. Because of my age, I consider that I have congenital heart disease caused by several defects. I agree with Scoot that people tend to think I acquired my heart disease as they ignore the word "congenital". So, even tho I like the word "defect", I consider myself a person with a disease...a disease I was BORN with. And, I do have many complications and other ills I truly believe came about because of my coarctation, the defect. Can we try both, and; instead of one or the other? I loved reading about how others view this word issue. Thank you.

By Toni M Smith on   7/18/2011 11:31 PM

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