On Thursday of this past week, Namine had an appointment with her ENT doctor. In it were discussed routine things — like bronchoscopies — and scary, new things — like frenulotomies.
A topic that has been talked to death is that of Namine’s frenulum. So let me back up a bit, give you a little bit of history, and then on to Thursday’s appointment.
On being tongue-tied
Having been born with Pierre Robin Sequence (referred to henceforth as PRS), one of the resulting abnormalities is the fact that she is tongue-tied. In fact, it’s one thing that not only has not been corrected, but that we, as her parents, have refused to have corrected. And there’s a good reason for that.
Namine has already had quite a bit done with her jaw and airway. Because her lower jaw was regressed so much due to PRS, she had to have a tracheostomy. She had a mandibular distraction to bring the jaw forward, in order to provide her airway more room to breathe, as well as a palate repair. When she was about two years old, she was able to breathe on her own without assistance from the trache.
The frenulum is that bit of webbing beneath your tongue. Normally, it doesn’t extend very far. But in some cases, as with Namine, it extends to the tip of the tongue, essentially tying it down to the floor of the mouth. This is what happened with Namine.
When she got rid of the trache, Namine could finally make enough noise to learn to speak. But she can’t make all the same shapes with her mouth to make the sounds we use in the English language (or American if you want to be pedantic), because she’s tongue-tied. She approximates fairly well, and she does her best, but it’s still a limitation she’s had to live with. And now that she’s older, she may not have to.
In late August, Namine has an appointment to have a bronchoscopy. Before Namine’s jaw distraction, her tongue would collapse against her airway, blocking it. So this is a routine procedure — done at least a couple times a year — as a precaution against possible recurrence. But it’s also routine for another reason.
Namine’s tongue doesn’t collapse as far as it might because of the frenulum — because she’s tongue-tied. If she weren’t tongue-tied, Namine would more likely than not still, even now, require a trache. This has been a point of contention among the doctors at the hospital, with some insisting on clipping the frenulum regardless of how much room there currently exists in Namine’s airway. Fortunately, Namine’s doctor (who has been following her for years) is on our side — she is against clipping the frenulum, at least while there is any possibility that she would again require a trache.
And that leads me back to August’s bronchoscopy: its purpose this time is to see how much room is in Namine’s airway. To see, now that she’s older, now she’s grown more, if she can undergo a frenulotomy.
Clipping the frenulum
If you’ve been following Namine’s ENT appointments as I’ve written them, you’ll know what a big deal this is. This is huge. Words cannot describe to potential, the worry, involved with the discussion of clipping Namine’s frenulum.
That said, clipping the frenulum is not an all-or-nothing deal. Once the doctor has seen Namine’s airway, she’ll come out and talk to us. She’ll show us pictures. If she thinks there’s enough room in the airway, and if we agree, then she’ll clip the frenulum — but not the entire thing. She’ll clip it, say, an eighth of an inch.
I know there are people who won’t understand. People who know Namine, who say that she speaks fine. That she doesn’t need any more correction. But if that were the case, then why does she still need speech therapy? Why do some people — not all, but enough of a number to remain significant — who listen to her and ask us to repeat what she said?
If we’re being completely honest, and we must be, we must admit that Namine still needs help with speech. Having the frenulotomy is not without its risks, we know this. But the benefit is, we believe, worth the risk.