Namine had an appointment in the dental clinic the other day. We have some hard decisions ahead of us.

Namine has had adult teeth coming in for a while now. Adult teeth are, of course, larger than baby teeth. And I hear you say, “Of course, Paul. That’s how it works for every child. So what?” Well, I’ll tell you what. But first, let me back up to discuss some history.

Pierre Robin Sequence is not a single birth defect. It is the name given to the result of a series of events — thus the term “sequence,” not “syndrome” — all of which resulted in the complications she had to deal with. Those complications included a small lower jaw (micrognathia), tongue-tied (ankyloglossia), and a cleft palate.

Over the years, Namine has had corrective surgeries to amend these complications: a tracheostomy (and decannulation), mandibular distraction, cleft palate closure, and partial frenectomy. She also had a palatal prosthetic for a time, to help with speech, but she no longer needs or wears it.

We were cautioned by Namine’s plastic surgeon, back when Namine had the jaw distraction, that her lower jaw might stop growing. Sometimes that happens, and the result is the child needing multiple distractions as they grow. Fortunately, that turned out to not be the case for Namine; she has not needed any further distractions. However, there is a new problem.

Because Namine has a smaller jaw, and will always have a smaller jaw, there is less room for her new, larger teeth. She doesn’t have all her adult teeth yet, but already we’re beginning to see some crowding, especially in her lower jaw (which should be a surprise to no one). As more teeth come in, they have nowhere to go. Teeth grind together, causing cavities that simply cannot be prevented. They push other teeth aside, forcing them to go askew. Simply put, they have nowhere to go in Namine’s small mouth. Two solutions have been suggested to us.

The first is simple: pull some teeth. At this early stage, we don’t know which teeth or even how many would need to be pulled; further clinic visits are required to analyze and discuss the options.

The second procedure is more invasive. Simply put, it would widen Namine’s jaw. I don’t recall the name of the procedure, but from the sound of it, it’s not too dissimilar to the mandibular distraction in that hardware would be used, and bone would be drilled through. But instead of lengthening the jaw forward, which is what the distraction did, this procedure would widen Namine’s mouth so that all her teeth would fit.

Jessica and I are definitely leaning toward the first option, pulling teeth. As brave as Namine is (and she is not only brave but mature in her understanding why she has had surgeries), we prefer to put her through as few procedures as possible.

Enlarge

IMG_20131126_143729
The palatal prosthetic did its job, but its ability was limited.

When the subject of the frenectomy came up — several times — we were against it. To be fair, when the hospital’s speech pathologist broached the topic, it was as an all-or-nothing solution. The reality was far more nuanced; the final procedure was only a partial frenectomy. We were against it at first, but Namine had already gone through using the palatal prosthetic. It helped her learn how to better make sounds, but it couldn’t help with her tongue’s restricted movement.

My point is that we don’t subject Namine to procedures just for the heck of it. There must be a good reason for it — and not only that, but there must be no other recourse. In this case, putting Namine through a reconfiguration of the bone structure of her jaw seems like too much.