Big Surgery News!

Beckwith-Wiedemann Syndrome

After many panicked months of wondering if we can afford it or not, we jumped in with both feet and scheduled a date for a tongue reduction/correction surgery for both of the boys with Dr Marsh in St. Louis. (He is the big expert on Beckwith Wiedemann Syndrome and pretty much every person with BWS in the country I have talked to has either gotten their tongue reduced by him, or wants to. So, he is the real, honest to goodness Joe Biden-style BFD.)

I got to a point where I decided I would rather sell everything I own and live out of my car if it came to insurance not covering the surgeries. I just can’t wait any longer. Dr. Marsh has hinted he will retire soon and the boys are getting older. The bigger you get, the more this surgery hurts. Recovery stretches out a lot longer as you age. It took me a few months to heal after I had mine at age 20. My boys deserve to grow up without speech impediments, sleep issues, oral hygiene problems, and without the bullying that comes with having a big and mangled looking tongue. I had it slightly easier than they currently do because while my tongue was big, it wasn’t scarred and horrible looking.

As a refresher, here is what their tongues look like now, after their first reduction surgery which was preformed in Ann Arbor, MI:

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Not too pretty, is it? For reference, I have had mine done just once and here is what I look like (sometimes without the ridiculous face, but not usually):

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I know, it’s hard to notice the tongue because of that face. We were having a rare night out. That is the excuse I am sticking with.

Back to the main point. I had mine done once. As an adult. I sometimes wish it was a little smaller, but it’s not horrible. I am, on a whole, satisfied with the work that was done. I would never ask to have it re-done. But, knowing the surgeon who did it, if she were still practicing, I know she would at least consider it. That is the opposite of what we got from the twins’ surgeon who adamently will not re-consider surgical intervention for the twins. Apparently he thinks there is nothing wrong with their tongues. I, along with 3 other surgeons that I have spoken with, disagree.

I am especially annoyed by the first surgeon not taking my complaints to heart about this under consideration because, I have been trying since they were 4 to get this looked at. This is not a fun surgery. I know it hurts like a mother. Hands down, the worst pain I have ever felt and this is taking in to account I have broken bones, had two c-sections, and had my pinkie toes sawed off and re-attached in a more pleasing arrangement. (That’s a pretty good story, too. Remind me about that one later.) This is not the kind of pain I want to inflict on anyone, much less my children. Much less twice! And the older they get, the more agitated I become.

Because I remember the teasing, the braces, the lisp… I would give my arm to help them avoid that. And I might have to. This won’t be fun, and it won’t be cheap. As it is, our insurance is balking at the idea of paying for it. Yes, some adjuster somewhere looked at the pictures of those little tongues and determined they were “fine” because the original surgeon claims they are “fine”. “Fine” my rosy, red rear. That is not what “fine” looks like. “Fine” is my tongue. I lost some taste buds and it’s not perfect, but if I don’t tell people, no one knows it’s been surgically altered. The boys are constantly being asked what happened to them and what is wrong. I have had people ask me if they are cognitively impaired because of their speech and the way their tongues look. You think that’s insulting now? Wait until middle school when they really understand the questions and take them to heart.

And that’s why I am not waiting for the insurance Gods, the ACA, or President Obama himself to give me the “all clear”. I am not going to let them have that life experience. It made me strong and gave me a good sense of humor, but I don’t want my kids to have to earn their senses of humor the hard way.

So now, we try to save our pennies for August so we can go to St Louis and fix those little tongues. Prayers, good thoughts, stiff drinks, and monetary support are all more than welcomed.

EDIT FOR IMGUR: Keep in mind this was before the approval and then un-approval of the insurance company. But, alas. Link to Imgur post: http://imgur.com/a/8xCdD

 

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