I completely forgot to write about Namine’s speech pathology appointment last week. I wasn’t able to go myself, but Jessica took Namine and told me about it later. I regret to report that the pathologist is still an idiot.

Namine went through the same rigmarole as when she was seen in October of last year: video x-ray to monitor her mouth movement when speaking; hearing test; and checking the air leakage coming out of her nose when she speaks.

Well, first the good news: Namine’s hearing is still fine. There was never any real worry, since every hearing test has thus far come back fine; but her ear canals are smaller than average, and hearing loss is a common risk of Pierre Robin sequence. (Statistics show that on average, PRS patients have an 83% hearing loss. Looks like Namine really beat the odds on that one! No wonder her ENT doctor wants frequent hearing checks.) Looks like the only hearing loss Namine has is when we tell her to clean her room.

But on to a more serious matter. You might recall that last time, the speech pathologist recommended that we have Namine’s frenulum clipped. The frenulum is the webbing that connects from the tongue to the floor of the mouth. Instead of being located at the base of the tongue, Namine’s connects all the way to the tip of her tongue, resulting in her being “tongue-tied” and unable to make all the sounds we use in speech. A few good examples are the “D,” “S,” and “L” sounds – all sounds that are made by moving the tip of the tongue. Clipping the frenulum would free her tongue, enabling her to make the sounds unimpeded.

Sounds like a good deal, right? A little pain in exchange for better speech, sure. Except that as in all things, it’s not that simple. Clipping Namine’s frenulum could also bring about some serious problems.

At the core of Namine’s speech problems is, of course, her Pierre Robin sequence. It is the cause of her tied tongue and her regressed jaw. And it’s the regressed jaw that is the reason for not clipping her frenulum; even though her jaw has been brought forward significantly – thanks to the jaw distraction – it will always sit a little further back. If Namine’s tongue has the freedom to move, it could very well collapse back and suffocate her. The wrong position while sleeping could kill her. The solution to that, then, would be one of two options: 1) wire her tongue to the floor of her mouth (how in any plane of reality that could be called a “solution” is beyond me) or 2) trach her once more. The third option, then, is the only option: do nothing about her tongue. Simply let her be, and continue on with speech therapy to make her sound approximations as good as they can be.

That was the decision made eight months ago – to do nothing – and Namine’s ENT doctor supported our decision. And in the face of the opposition – this jerk who thinks he knows Namine’s needs better than we – we are deciding the same thing.

The frustrating thing here is that he’s not considering the whole picture, nor is he willing to. He’s simply looking at one thing: Namine’s speech, and how it might be improved. I’m sorry, but her speech has still not reached a plateau. Just earlier this week Namine said the word “library” perfectly: tongue between her teeth to construct the “L,” transitioning flawlessly between the “B” and the “R.” It wasn’t easy; it took a few tries, and more than a little encouragement from us; but she did it nonetheless. And the second time was easier; the third time easier still. Namine knew how hard it was to make the word, thereby making the payoff all the greater. She kept saying “library” for nearly the rest of the evening, giggling while she did it.

Husband. Daddy. Programmer. Artist. I’m not an expert, I just play one in real life.

  • theblondeview

    I applaud you both for standing your ground on what’s best for Namine! Too often, specialist (of any kind) can be hyperfocused on their area of expertise and therefore, make recommendations that are truly harmful overall, if not dangerous.