Let’s Re-brand CHD

Every year businesses re-brand to distinguish themselves in the marketplace.  Some, like Target, do it well with their designer-at-a-lower-price products. Some like abercrombie & fitch no fatties and JC (confuse our loyal customers) Penney . . . not so much, but for totally different reasons. Re-branding can be an iPod or a New Coke; there’s a risk to everything.

CHD research is horrendously underfunded.  We really don’t have a lot to lose, but plenty to gain.  So I say, let’s re-brand!  As advocates we can re-brand CHD to our advantage and disambiguate (love that wikipedia word)  it from other forms of heart disease simply by using the word defect instead of disease.

I recently participated on a panel at the 2013 Joint Meeting of the Newborn Screening and Genetic Testing Symposium and the International Society for Neonatal Screening, where I suggested that we need to be consistent with the CHD brand just like Cystic Fibrosis is consistent with its language.

Another advocate asked me if it was Congenital Heart Disease or Defect.  I explained that we do generally call it Congenital Heart Disease, but I think we should STOP.   Let’s stop right now.  CHD is more defect than disease and by calling it what it is, we can disambiguate it from what it is not. It is NOT adult onset cardiovascular disease.  Let’s all call it Congenital Heart Defects because they ARE birth defects.  Let’s differentiate CHD from adult onset cardiovascular disease.

The word “Congenital” is confusing to those who haven’t experienced birth defects.  I once had a TV news reporter ask me about “congenial” heart disease . . .  I suppose if it’s congenial than it’s a good team player?  Anyway, now we have two  complex, multi-sylablic C words followed by “heart disease” which is completely ambiguous, and the average unaffected person can’t tell the difference.  Most of us have to admit that until our kids actually had CHD we didn’t know the difference either. I own that.

Let’s divorce disease and embrace defects because we will all be talking about the same thing.   I want to use the right language, the right brand for what my son actually has, so that money raised to battle his actual affliction is directed appropriately.  Besides, I think we’ll get more traction.

I want to use the right language so that any new parent with any one of a myriad and exponential combination of heart defects can find information easily.  I want to re-brand so that if my son shows up to a survivors’ support group in his 20s or 30s surrounded by elderly people he can not only differentiate his condition but possibly seek out people with the same.  Of course I hope someday there will be elderly people with Congenital Heart Defects, but to get there we need more, better, and faster research now!

We have no name recognition.  We can’t drop Congenital because it’s accurate but difficult. But, we can explain that it is a birth defect, and it is also on a spectrum like autism.  Some CHD cases are severe and immediately life-threatening and some are mild and need to be monitored if not treated.  I want to re-brand CHD so that we are all on the same page, talking about a disease that starts in the womb and lasts until the grave.  Right now this is a disease that has no “prevention,” just some slight risk mitigation.  Risk mitigation, I will add, that many of us took and still had CHD babies.

So, here is the memo for our new brand roll out – please share. We don’t want anyone to miss the memo.

Memorandum

To: All those impacted in any way by Congenital Heart Defects (including patients, parents, children, spouses, grandparents, siblings, friends, neighbors, coworkers, etc.)

From: The Office of the Amandafesto, The Heartland

Date: May 18, 2013

Subject: Re-branding CHD to Congenital Heart Defects

In future, please try to explain CHD as a defect and stress the terms heart defect or birth defect as needed to ensure people you are educating about CHD understand that it is a health condition present (though not always detected or diagnosed) at birth.  CHD is a structural or cellular defect of the heart muscle and surrounding vascular system and has hundreds of complex variations, so the term “heart defect(s)” may be the most effective way to introduce CHD.  Please also remember to explain that CHD has a spectrum of severity, but all children and adults impacted by CHD (2 million and growing in the USA) deserve adequate live-saving research. Thanks for your support – let’s hope we’re not the New Coke and CHD awareness grows from this re-branding effort!

7 Comments »

  1. I have never heard it referred to as anything but a congenital heart defect. All the doctors that we’ve seen and our mended little hearts group referto it that way. After all it is a birth defect not a birth disease. Thanks for posting the memo!

  2. I rarely see “disease” used, but when I do, I try to inform the source the difference between “disease” and “defect”. CHD needs not only to be re-branded, but restructured period. Until the entire CHD community bands together as a whole, and not fractured groups with different agendas, we won’t ever accomplish what so many other “disease” or “defect” communities are accomplishing. This is a great start, though!

    • I’ve seen disease used more by medical professionals and outside groups, like in newspaper articles.Defect definitely seems more popular overall, especially with parents and patients, that should be telling. Let parents/patients lead the charge!

      • I meant to comment on the coming together thing as one big group. I agree and disagree. Might catch some heat for this, but yes, we are ONE community, and always will be. Sometimes that gets lost, but we have different priorities and different ways of thinking. For example, groups like the Adult Congenital Heart Association aren’t interested in newborn screening for CCHD at all. Whereas right now it’s one of the most important things to me and some other groups. Others feel research is more important. Others want and need support groups. We need to always make sure that everyone’s needs are met. We need to find ways to unite when needed, like in a larger coalition (as was tried once and sadly didn’t work out). Hope that my thoughts were clear, because I don’t want anyone to misunderstand.

  3. Its funny you post this info this week as I just had a conversation with DJ’s PE teacher about this very subject. Dj’s school held an event, “Jump for Heart” and his school raised some decent money and awareness but it was all geared and I mean ALL geared at educating about adult onset heart disease and there was no mention at all that there is such a thing as heart defects to be aware of. I mean if you are going to use kids to raise awarness for anything heart related shouldn’t it be about awarness of what affects them as kids, not some obscure disease that happens in old age. I talked with him about all the differences that totally contradicted his teachings, like to have a healthy heart we must eat healthy. I explained how DJ went on a high fat high calorie diet to gain as much weight as possible before each surgery. Exercize will give you a healthy heart, ah no, lets limit exercize for those with defects and the one that got him most was, disease means you limit salt and drink plenty of water.In PICU DJ was on water restriction and extra salt added in his diet because his salt levels had dropped so low he was at risk for seizures. I told him in addition to what he is teaching if he could consider also presenting that there are two forms of heart issues, those acquired as adults and those that are present when a baby is born. And there are a large number that go undiagnosed until they are in PE and are overdoing it. On my local news there are way to many kids that have been in an activity and had a heart attack due to an undiagnosed heart defect. So as a PE teacher I gave him one of my books to help him with understanding what CHD is, the most common CHDs and what to look for as far as outward symptoms. I applaud you for saying lets use DEFECT and not disease and I agree, because for some reason when I talk to others they think DJ’s surgeries and medications will bring about a cure. A lot of disease can be cured or be well managed. Defects can be helped, and life extended, but not cured in this realm, well usually anyways….

  4. Hi this is Nathan Broderick my mom raegan Roderick talked with you Amanda and told you about me and how I have HLHS witch means hyper plastic left heart syndrome. I am just like Liam your son but I have heard that he has his right side of his heart missing. I am 18 years old and I’m so proud and ustonished about your song Liam hwo has had 12 surgerys already and he’s only 10. I have to say even though I’m 18 I’m looking up to Liam.

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