Let’s close this case!

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.

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3 Responses to “Let’s close this case!”

  1. heather Says:

    great point! i generally describe asher’s heart by saying, “the part of the heart that pumps the blood out to the body, and the part that carries the blood from the heart to the body… yeah, he doesn’t have those.” most people understand that, i’ve found. and i rarely use the term “CHD” when talking about asher. i prefer the term “wonky heart.” and i say he has half a heart and that he’s had 27 hospital admissions and 13 surgeries… and leave it at that. people hear those phrases, and get a great idea of what our lives have been like so far… and then if they want, i explain further about his “wonky kidneys” and “weak immune system” and the fact that he “couldn’t eat” for almost 3 years. the only technical term i use is “pacemaker,” but i haven’t met anyone so far who doesn’t know what that is… although it’s usually b/c their grandfather had one, and asher is the first kid they’ve heard of with one. when they ask why, i just say that he has it to deal with a complication from open heart surgery, and leave out terms like “severe bradycardia, junctional escape rhythm, and Sick Sinus Syndrome with intermittent AV block.” LOL people understand “bunch of nerves with metal in them” better than “stent material in his AV node.”

    but i’d never thought about the math there… even my mind is really from 4 babies during a 1-hour show!!!

  2. Jill Haskins Says:

    I love it…keep it simple stupid! I think I have learned more about heart defects from your blog than I have from our ped. cariologist.

    I am going to be induced Aug. 16, with Joshua’s Norwood taking place on the 19th. I still don’t understand all that they are going to do during the surgery. (he has been diagnosed with HLHS) Do you have any good keep it simple stupid resources that will help us to better understand what they will do during the surgery? The doctors have explained it a few times, but we are still so confused!

  3. mendedlittlehearts Says:

    Great thoughts Steve! In order for us to build compassion for heart defects, we do need to speak the same language and share a message that everyone understands. I heard one woman say to her law makers, my heart is broken… it’s shaped really funny, and it can never be fixed. The room filled with tears. Thanks for pointing us in the right direction!

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