Having Pierre Robin Sequence, Namine sees a dentist at the hospital. She used to be afraid of the dentist, but that seems to be well in the past — I suspect her comfort in taking care of her teeth helps play a part. As for the appointment itself, it went without surprise or fanfare. Namine has no more cavities than she did last time, and will likely lose at least four more baby teeth that are already loose within the next six months.

Namine’s existing cavities, we were originally told (and the story has not changed), are there due to her small jaw. Her lower jaw is regressed and smaller because of the Pierre Robin, and her teeth are pressed closer together, resulting in extra wear on the teeth themselves, which in turn resulted in cavities. Fortunately, Namine has good teeth habits — she brushes, flosses, and uses mouthwash on her own, with just spot-checks done by Jessica or myself — and has prevented further cavities from forming.

Namine with her jaw distractors.
Namine with her jaw distractors.

Caring for a growing child’s teeth is a tricky business in and of itself, but PRS throws a few more curveballs. In order for Namine to be decannulated in the first place, she had to have two operations: a mandibular distraction, and a cleft palate repair. The distraction, you may recall, brought her jaw forward, preventing her airway collapse. It was also the first of potentially many.

The plastic surgeon who performed the initial distraction warned us that many children’s jaws, having undergone the procedure, failed to continue growing. This would require a new distraction as often as every six months, depending on the child’s growth speed. I am happy to say, however, that Namine’s jaw continues to grow with the rest of her, removing the need for further mandibular surgery.

But as Namine continues to grow, there remains the possibility that there will not be enough room in her jaw for all her new adult teeth. Her lower jaw will always be proportionally smaller to the rest of her head, and it will also always be a little further back — no amount of surgery can change that. As a result, Namine will not only likely require braces, but she may also need to have a couple molars pulled in order to make room for the rest of her teeth.