We knew that we would be getting a follow-up call after Namine’s cleft palate clinic appointments. It was expected, if only because we’d already done the same thing six months ago. What we didn’t expect was the utter stupidity accompanying the call.
When Jessica received the follow-up call from one of the cleft palate clinic nurses, she expected to hear all about air leakage, about how Namine will not be able to properly make the speech sounds she’ll need to make without a prosthesis or surgery. We’ve heard it all before, and the conclusion every time is that as long as Namine has not plateued – that is, she continues to improve in speech – no external action will be taken. In other words, no surgery. Well, not this time, apparently.
The nurse told Jessica that they’d gone ahead and started to plan the surgical procedure to clip Namine’s frenulum. That’s the webbing that connects the bottom of your tongue to the bottom of your mouth. Namine, remember, is tongue-tied: her frenulum extends to the tip of her tongue, restricting its movement. Wait a minute, here. We hadn’t given the okay to even do the procedure, and they wanted to schedule it? I don’t think so.
Let me back up a bit here, and explain some things about Namine and this procedure. Because on the surface, it sounds like candy and roses. Clip her frenulum, and suddenly she has full movement with her tongue. It’s like a freaking modern miracle, right? Wrong.
Namine was born with Pierre Robin sequence. It’s commonly mistaken for a syndrome, but it’s not a single genetic outcome; it’s the culmination of several multiple genetic outcomes, all laid on top of one another. The end result you see in one patient is never the same as in another. And the end result we see in Namine is her beautiful slightly uptilted almond-shaped eyes (the uptilt is more noticeable when she smiles), her small mouth, her U-shaped cleft palate (which was repaired by our very own Dr. Denny, who looks like a scary biker but is actually a very nice man), and her regressed jaw (also repaired through a mandibular distraction by Dr. Denny).
I feel I need to further explain about her jaw, so I hope you’ll bear with me. Namine’s jaw was not only regressed (which cut off her ability to breathe and was what necessitated the trach for two and a half years), it is also proportionally smaller. So even though Namine has had the jaw distraction, which brought it forward significantly (so that she was eventually able to lose the trach for good), it is still back farther than a normal child’s would be. Furthermore, because her jaw is smaller, her tongue is placed farther back. And the only reason she was able to lose the trach, even with the jaw distraction having been done, was because she is tongue-tied. Without the frenulum holding her tongue in place, it would collapse into her airway and suffocate her.
Perhaps you can see where I’m going with this.
Six months ago, in Namine’s previous evaluation, they concluded that clipping the frenulum posed too many risks. There was a chance that her tongue would not collapse into her airway, but there was also a chance that it would. (I’m sure one of the “experts” has a percentage of these chances, but I don’t really care. I’m not about to gamble on my daughter’s life.) If her tongue did collapse, measures would need to be taken. (Keep in mind that this would all be in the operating room, with Namine asleep and intubated.)
The first recovery attempt would be to sew the frenulum back up. I don’t even want to think about how painful that would be.
If that didn’t work, the second option would be to make a hole in her jaw and through it, wire her tongue in place. To say nothing of the pain, do you hear that? That’s the sound of all her hard work at speaking, going right out the window. See that? There it goes.
And if that failed, she would need a trach once more, this time perhaps for life. And we’ve sufficiently and totally screwed the future she might have had.
Even now, six months later, these risks are still present. The doctors who want to do this procedure, clipping Namine’s frenulum, have already acknowledged that these are very real possibilities.
I see no reason whatsoever to follow along with the doctors’ plan at this point. Jessica and I will have a meeting with all Namine’s doctors involved in this, including the Special Needs director, Dr. Gordon. And we are going to get to the bottom of this and find out precisely why they suddenly decided to go ahead with this. Why now, when only six months ago they said it would be too dangerous? Why now, when Namine’s progress in speech has not even slowed down, much less stopped? Why now, and risk everything she’s won, everything she’s fought so hard to gain?