Posted by Michele on 1/8/2008, 12:13 am
206.55.186.237
Hello everyone,
I am new to this board and have a question for those familiar with the long-term outcomes of people with PRS. Please forgive the length...
Our son, who is now 4 months old, was diagnosed with PRS at birth. Initially we struggled with feeding but he is now thriving on expressed breast milk bottle fed with a haberman. At this point he is in the 50% for weight and 80% for height. Thankfully, despite having a fairly wide, u-shaped cleft of the secondary palate, he is a healthy, happy and beautiful baby who has not required any medical interventions or procedures. He has been evaluated by a plastic surgeon, geneticist and eye specialist and it is believed that he has Isolated PRS. Given how well he has faired thus far we've been optimistic about his outcome once he has the palate repair surgery at around 12 mos. We expect his jaw to grow out on its own and have hoped that with speech therapy, he'll go on to be a "normal" boy.
However, recently we met a syndromic little boy of about 5 who had undergone a palate repair surgery (lip as well) at 12 mos. Clearly it has affected the growth of his mid-face / upper jaw to the point of his face looking quite distorted. After further research I've read that it's quite common for surgeries of even the soft palate alone to impair mid-facial growth. The distortion becomes especially visible after the growth spurt in adolescence.
Can anyone speak to the long-term facial growth issues posed to children with PRS? I have read that a prosthetic is a rarely used alternative to early palate repair surgery which has the benefit of permitting full facial/maxillary growth. But has the disadvantage of needing bi-weekly size adjustments. Does anyone have any experience with a prosthetic? If so, how does it work in terms of speech development? Could that be used until full growth is achieved and then the palate repaired surgically?
Again, I apologize for going on so long. Any feedback would be greatly appreciated!
Michele
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