Plastic Surgery Appointment...
So, for all you PRS folks (and other underdeveloped jaw folks) I have some questions. First, Harlie doesn't have PRS (I think you have to have a cleft palate, too, for that, right)? She doesn't have a cleft palate. Just the underdeveloped lower jaw. She's missing several bones as well. Anyway, we have seen 4 ENTs now. I have asked each one about using a PMV. To me, it just doesn't make sense that it would be safe for her. It is an upper airway obstruction. They have all said that she will move her tongue out of the way. So far, the PMV has not gone well. She cannot exhale through her mouth.
So, on Tuesday we saw her plastic surgeon about jaw reconstruction surgery. He said that her mandible is so small and that her tongue base is basically in her airway. He said she is incapable of moving it out the way. He does not see how it would be possible for her to exhale without the trach (or swallow for that matter).
So, what have you guys experienced on this subject? I know there are different degrees of underdevelopment. So far, I've been told that Harlie's is very severe. Do your kids tolerate the PMV and what are your plans for reconstruction surgery?
Our plan is to have another CT scan done in Feb/Mar and then surgery in MAY! YAHOO! He said that jaw distraction won't work for her. He is going to go in and cut her jaw, and insert bone taken from her skull to extend her jaw. He will place it where he wants it and then wire it shut like that for 8 weeks. So, right after surgery, she will have a chin! Oh, they are going to replace the bone taken from her skull with cadaver bone. Weird. Anyway, has anyone else done this?
Any info on this will be very much appreciated. Thanks!
Christy, Mom to Murphy, (8), Harlie (6) and Cooper (4). Harlie has Goldenhar Syndrome & VACTERL Assoc. Missing left ear/canal, left eye anomalies, g-tube & trached due to underdeveloped jaw, 5 open
surgeries, three jaw reconstructions (still trached, though), spinal fusion surgery, 30 surgeries total so far. www.lifesinceharlie.blogspot.com