Posts Tagged ‘Awareness’

Let’s close this case!

July 9, 2010

Is there anyone here who is a fan of the TNT tv series The Closer?

At first I didn’t really understand the show, and then it hit me – even though she portrays the same person, star Kyra Sedgwick plays her role as if she has a split personality. Sedgwick plays the role of Deputy Chief of Police Brenda Lee Johnson, and in “normal life”, she’s just Brenda Lee – a hapless, helpless Southern Belle who is almost in above her head and barely makes it through the day. But when the Priority Homicide team gets a suspect into the Interrogation Room, Brenda Lee goes away. Highly trained police officer Deputy Chief Johnson takes over. The Deputy Chief remembers everything and she can’t be fooled. She has a mind like a computer, she’ll calmly tear an alibi apart, and before long someone’s headed to jail. And it seems that the moment the case is solved, she turns back into stumbling, fumbling Brenda Lee.

It is a good show and is very entertaining. Sedgwick is very good, playing the same role from two entirely different perspectives – that has to be difficult to do (I can’t play myself on some days!). The Closer is an hour-long drama – 48 minutes if you record it and zip past the commercials. In that hour you’ll see a good story, a very good actress, and have a laugh or two. And in that hour four children will be born with a Congenital Heart Defect.

Whoa – never think about an hour of TV quite the same, will you?

That’s one of the problems with educating the general public about Heart Defects: The statistics are just too big. The National Heart, Lung, and Blood Institute (NHLBI) reports that 8 in every 1000 American Children will be born with a heart defect. That’s accurate, but a pretty large number -much bigger than our circle of friends. And if the number is bigger than what we can easily comprehend, our brains just seem to “turn off”. That’s why your local politician can say this programs will “only” cost two billion dollars and no one says anything. You can’t logically think about a number that big.

So for the 8 in 1000 number to make sense, you have to personally know 1000 pregnant women. That’s the only way to get a frame of reference. Most people can’t even name 1000 people that they know, much less 1000 women (who may or may not be pregnant). The March of Dimes did a little math and they report the number as 1 out of 125 children (1000 divided by 8 equals 125; so 1 in 125 is also accurate). That’s better, but it is still a big number. So using a little more math gets us down to the 4 children every hour figure.

That’s understandable – even our youngest can count to four, and practically everyone can conceive of an hour. So now we have a figure that we can easily relate to.

Another problem we have in CHD education is that we tend to speak our own language. The letters CHD strike fear in the hearts of those of us who have lived it – but what if you have never been in our shoes? The letters mean nothing. The varieties of the defect have medical names that very few can pronounce and even fewer understand. What is Tricuspid Atresia to the uninitiated? Most of us would understand Tri and that’s about it – it has something to do with three, as far as they know.

We don’t even understand our own language – try telling the momma of a child with Dexiocardia what Scimitar Syndrome is. She doesn’t know, and quite honestly she doesn’t need to know – her child has their own set of problems that she has to worry about. And to be fair, tell the Scimitar Syndrome mom about Dexiocardia. She’ll probably know it is a heart defect, but that’s all. (I intentionally didn’t provide a link to either Dexiocardia or Scimitar Syndrome. It isn’t so easy to comprehend if you can’t just click a link, is it?)

Another part of our language we can’t understand is our repair options. Most of them are named after people, and usually we don’t know why they have that name, who the people are, or what they did. You usually have to be a “giant in the medical community” to have an operation named after you, but that gives us almost nothing to help us understand the person. The Glenn procedure? What good does that do? How will it help my child? And when you learn exactly what the operation does, we’re still using medical terms and it seems that we understand less than before we began. Instead of medical jargon, we need a good drawing of the heart and someone who can speak everyday English.

“You take this blood vessel, unplug it from the heart, and sew it together with this blood vessel. You sew them together as close to the middle as possible so blood can flow to both lungs.” would make so much more sense than what we usually hear: “The Glenn Procedure is a Superior Vena Cava to Pulmonary Artery anastomosis.”

You can’t really be educated about a subject if you can’t understand what is being said. And when you receive a diagnosis of a heart defect, there is rarely any time to take Cardiology 101 and get ready to speak the language. So we have to do our best to get it down to numbers we can all understand, and get our point across in plain, simple English.

KISS – Keep it Simple, Stupid. Yeah, we have to pull out that old line – and follow it, if need be. We owe that to the Cardiac Kids who aren’t here yet, and to the legion of young parents who will be thrown headfirst into this world.

Deputy Chief Johnson would agree – anything less than our best efforts would be a crime.

Five CHD Questions: Why?

May 13, 2010

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;