Posts Tagged ‘scars’

…And say ‘To-morrow is Saint Crispian’

October 24, 2010

If you are a fellow heart surgery Survivor, a Heart Parent, or just want to help rid the world of Congenital Heart Defects, feel free to link to Monday’s post. It will appear very late on the night of Sunday, October 24.

Weighed and Measured

July 18, 2010

Whoa!

A Heart Mom is threatening to go ballistic on someone:

I told my husband what had happened and of course his solution to the problem involved me waving around my giant stick and teaching them a valuable lesson about staring at our small child.  While that approach may have gotten some results, not to mention cause a pretty big scene, it wasn’t one that I felt was appropriate for our children to be witness to.

Good thing she kept her wits about her. Local law enforcement authorities usually don’t take kindly to people waving large sticks in public, no matter what the reason. The point of conflict here – as you may guess – was a group of people who seemed to have nothing better to do than to stare at her Cardiac Kid’s scars. It turned into a real whisper-fest, and even though the child was a bit young to recognize what was happening, Mom saw it. And the steam was coming out of her ears.

“You have been weighed, you have been measured, and you have been found wanting. In what world could you possibly beat me?” – A Knight’s Tale, 2001

The basis for this line is from the scriptures, specifically Daniel 5:27 – Thou art weighed in the balances, and art found wanting. The King wasn’t good enough, so God slammed the door on his kingdom, and that very night the King perished. And that is exactly what was happening here: the local wags had seen the scar on her son’s chest; they had decided that he was…. different, somehow, and that wasn’t a good thing; and they had instantly judged that neither he nor his mom were part of the Cool Crew. Too bad, so sad. And as much as I hate to say it, that’s a fairly common reaction.

The hardest battle a Cardiac Kid has to fight will not happen in an operating room, but rather in their schoolyard playground. Kids aren’t necessarily mean, but they are brutally honest. You don’t ask “What happened to your chest?” or “Why you got to get tired all the time?” and they will stare – they’re children, after all. You sort of understand that this is the way children usually act. And Cardiac Kids have to fight these battles all own their on, just like everyone else. It’s how children learn to interact with other people, and hopefully grow past that stage.

But adults judging little kids? NOW we’ve got a problem.

Bring that behavior here, and I’m just crazy enough to start quoting Shakespeare: “Then will he strip his sleeve and show his scars, and say `These wounds I had on Crispian’s day’…We few, we happy few, we band of brothers (and sisters!), for he who sheds his blood with me shall be my brother.”

You see, no matter what snap judgement you may make of that kid with the scar, we see ourselves as survivors. And no matter what you may think, we weigh out correctly and we measure up.

And this is the story that a good man will teach his son.

What do you see?

June 25, 2010

“Through the mirror of my mind…” – Reflections, (1967) Diana Ross and the Supremes

I have a chest full of scars (Long time Funky Heart! readers have seen them) and they don’t bother me. I see them every day in the mirror and I am comfortable with them; but it wasn’t always like that. At one time I didn’t think of them as marks of survival, but as the debris of a real life horror story. I was much too young to remember the aftermath of my first surgery, but I was ten years old when I had my second. I remember that one quite well. I remember not being able to move my left arm without pain and I remember the bloody bandage that covered the incision. In all honesty, I did have a little seepage and there was a small amount of blood. But remember that I was young and I hadn’t been out of surgery that long.

I didn’t want to see them, didn’t want others to see them….and I’m not quite sure when or how it happened, but as time passed I came to appreciate them. They all show that “I’m still here!” Now I won’t pull open my shirt for strangers (You notice that you can’t see my face in that scar photo) but I’m not ashamed of them.

Some of us, however, are never able to make peace with our scars. And they certainly aren’t lesser people because of it; you have to do what is right for you. Thanks to new surgical techniques developed at Children’s Hospital Boston, future CHDers may not have to worry about a chest full of scars.

This really wasn’t intended to reduce scars, far from it. Dr Pedro del Nido started by looking for something – anything – that would avoid placing a young child on a Heart/Lung bypass machine. Long term exposure to the bypass machine can cause damage to a child’s developing brain, and del Nido would prefer to avoid that if at all possible. The technology to make this happen didn’t exist yet, so del Nido pretty much invented it.

His ideas developed two angles, both attacking the problem: superior heart imaging and using robotics in Congenital Cardiac Surgery. The imaging was very important, as a surgeon needs a good look at what is going on inside of a damaged heart before attempting a repair. Previously the only way to see what was going on was to cut the heart open – exactly what they were trying to avoid. Also, the imaging needs to be exceptionally good. An infant’s heart is the size of a walnut, and operating on it requires precision. So your imaging equipment had better be good. It was good, but it wasn’t what the team needed. The doctor needed to see the heart, functioning, in real-time, and preferably in three dimensions. Something that good didn’t exist, so del Nido and his unit decided to make one.

OK, that’s easier said than done. But the video game industry was already doing it, so Boston Children’s got together with a graphics card maker and rebuilt an Ultrasound machine. The surgeon has to wear special glasses to create the 3-d effect, but it works!

And then there was the robotic surgery angle. Making a small incision and doing everything through a Catheter – type device would not only reduce the number of scars, but would allow a surgeon to operate on a beating heart. That in itself would be a challenge in a child’s heart, where there isn’t enough room to change your mind. So the team developed a small tool – and it is small indeed, only a millimeter – that can be inserted into a beating heart and make surgical repairs. The time of surgery is shorter and the recovery takes less time, also.

So maybe the day is coming when you can have heart surgery but not have the scarring that goes along with it.  Don’t laugh, don’t doubt, because it wasn’t that long ago that everyone seemed to have that circular scar on their arm from the Smallpox vaccine. We don’t see those around too much any more – Smallpox was beaten.

We’ll beat Heart Defects one day, too!

BATTLE WOUNDS (NSFW)

October 24, 2009

October 25, 2009: Saint Crispin’s Day

“Then will he strip his sleeve and show his scars,

And say`These wounds I had on Crispin’s Day.’ “

Henry V, William Shakespeare

scars

Coming Sunday

October 22, 2009

Fair Warning: On Sunday, October 25, 2009, I am going to run a photograph of my bare chest. It will be NSFW – Not Safe for Work. I am hopeful that despite that, Funky Heart readers will still drop by.

I seriously doubt that female readers will be calling anytime soon; I am not a body builder. I’ve got some flab out front! (What? You expected muscles  so tight they could stop bullets? Not hardly!)

Like most survivors, I have a chest full of scars – and they make me who I am.You may hear someone say “My life changed when…”, but I don’t know any different.

Yet this journey has taken to places I never thought I would go; I have met some of the world’s best doctors – usually as a patient, I hate to say – and other survivors just like me. And best of all, I get to “speak” to you through this blog. I don’t see Tricuspid Atresia as a curse, though at times it can be a pain in the… ankle!

There will be a post every day this week, Saturday included, and then the photo on Sunday. I picked October 25 because it is St. Crispin’s Day. Why St. Crispin’s? Read  Shakespeare – specifically, Henry V. You’ll understand.

Coming soon

October 5, 2009

On October 25, Funky Heart will show the world his scars!

Am I proud of my scars? I don’t know if that is the correct word; I don’t have a problem with them. I don’t run around saying “You wanna see my scar?” but I don’t cringe around mirrors and seeing them does not bring up dark memories. Those wounds helped make me who I am – and they are proof that while I have taken a few blows, I’ve always been able to hang in there and fight back.

And since they don’t bother me, they really shouldn’t bother you. Don’t be afraid to ask me what those are, I’m not going to bite your head off (unless you act like a jerk!) And be prepared to sit and visit for a while – once I start talking about heart defects and survivors, I can be hard to stop!

Why October 25? If you read Shakespeare, you’ll know… October 25 is St. Crispin’s Day!

The Band

July 3, 2009

The small, short item I posted yesterday (Overheard) led to a lot of comments and discussion on my Facebook page, much more than I ever anticipated. With that in mind, I did a little research to see if there were any studies of attitudes of Heart Surgery Survivors toward their scars.

Minimally invasive surgical techniques are still being developed, so the overwhelming majority of us have a scar. The two most common are the Sternotomy scar, which is the traditional scar in the center of the chest, and the other one is the Thoracotomy scar, which begins in the center of the chest, curves under one arm, and ends near the center of the back.

A 2005 study done in the United Kingdom asked patients with a Congenital Heart Defect (CHD) surgical scar to take part in a structured interview that would explore their attitude about their scars. 201 patients took part: 105 of them had a Sternotomy scar; 36 had a Thoracotomy scar; and 60 patients had both.

The study showed that roughly the same percentage in each group “reported that they did not like or hated their scar”:  22% disliked their Sternotomy scar, 25% their Thoracotomy scar, and 28% of those with both scars disliked them. 56% of the respondents said that their scars affected their choice of clothing but unusually enough, further study showed that a Thoracotomy scar was looked on less favorably by the patient. I found this unusual, as the Thoracotomy scars under my arms are easier to conceal. I rarely think about them – I am much more likely to button one more button of my shirt to hide the scar down the center of my chest. The study does not provide information about the male/female breakdown of the study, so I have no idea if that may be a factor. (UPDATE: A female survivor on Facebook commented that Thoracotomy scars affected her choice of bras. Obviously a male would never consider that!)

A 2006 Canadian study of adults with Congenital Heart Defects established a similar result. 58% of the respondents saw themselves as “disfigured,” but 60% said that the scarring did not bother them as much now (At the time of the study) as it had during their younger years. 19% felt negatively about their scar, 22% felt positive, and 58% were neutral. And 61% of the participants “reported a positive effect on appreciation of health.”

Heart Surgery survivors – and everyone else – fall into the “Beautiful = Better” trap when we are young. But as we age, we seem to be able to come to grips with what we’ve been through and what those gashes on our chests really mean. We may never have the attitude of the soldier mentioned in Shakespeare’s Henry V“Then will he strip his sleeve and show his scars, and say ‘These wounds I had on Crispian’s day.'”

But we know who we are, and we understand what we’ve been through. We are, literally, a Band of Brothers and Sisters: “We few, we happy few, we band of  brothers; for he to-day that sheds his blood with me shall be my brother.”