What do you see?

“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!

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4 Responses to “What do you see?”

  1. Maya Says:

    How cool! It would be an amazing advancement to have heart surgery without the big scars. We spend a lot of time talking about scars to the teens I work with. Since our condition involves more than just our hearts, members of our community have other scars in addition to the lovely chest zipper. I’ve learned to wear mine with pride but the day new CHD patients don’t have to have them will be a day to celebrate for sure!

  2. heather Says:

    asher doesn’t usually like going shirtless… which is kind of sad, especially considering my other 2 kids were nudists at his age. LOL he never says anything about his scars, but he’s self-conscious about them. BUT!!!!

    last weekend, i took the kids for an impromptu picnic at the park in town. my older 2 kids decided to run around on the splash pad (fully clothed, since it was a VERY last-second decision to go, so we didn’t even have towels, let alone bathing suits! LOL). well! asher decided to follow them into the water, but he did something they didn’t…

    he took off his shirt.

    and stood at the edge of the splash pad for a couple minutes, just watching all the kids playing.

    it was honestly one of the most beautiful moments in his journey for me. he just stood there, shirtless, watching everyone playing, without a single thought of his scars (and WOW there are tons). and we’re not talking nicely healed and faded scars. no! all the scars from 2010 are still red and VERY visible (g-tube, 4 drain tubes, sternal incision, thoracotomy and pacemaker). he didn’t think about them at all, though. just stood there in a very crowded park, with all his scars out there for everyone to see. i shed a couple tears, i don’t mind admitting.

    in the end, he decided against the splash pad and opted for the very big playground equipment, where really, he just blended in with the other kids. you should have seen him, climbing all over the place and running around and laughing…

    if you didn’t know, you’d have no idea. ❤

    but still, given that he hates being shirtless even at home, it would be wonderful if future CHDers didn't have to grow up with those scars. "badges of honour" we call them… but i know asher's self-image suffers because of them, and he's only 3. 😦

  3. mendedlittlehearts Says:

    What a great article of hope.. moving past mere survival, to making outcomes even better! Thanks for the continued inspiration!!

  4. Shannon Carter Says:

    Great article! How wonderful the day will be when you go in to see your baby after surgery and don’t have to see the enormous bandages all over their chest!

    Hmmm…maybe video games aren’t so bad after all?

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