Cleft lip and palate repair

Several folks have emailed me and wanted to know about our surgery experience with cleft lip and palate. Our son was born with cleft lip and palate.
He had his first surgery in China by Love Without Boundaries a GREAT organization that helps children around the world. He was actually on their website homepage for a while before we went to get him in 2007! He was about 15 months old at that time.
When he came home to US at age 3 and he had palate repair about 4 months later. The surgeon told us his cleft was large, one of the biggest he had ever done. It seems a lot of us China adoptive parents with cleft kids hear that phrase. Anyway, he stretched the tissue and made a new palate. The problem with stretching the skin so far is that some of the tissue just cannot survive either the trauma of surgery or just having to be stretched so thin. So, we noticed a few months later he had a small hole right in the middle and a little "ridge" where the skin had met in the middle. Not much but enough to make it hard to make to "p" sound and other sounds needed in English speech! So we went back to surgeon and he said it was too soon for more surgery. He recommended we see orthodontist to make an "obturator" which is sort of like a retainer to cover the hole. So we did. The obturator stayed in 1 1/2 years and then in the fall of 09 one of the bands broke (think like braces) they do that especially when they've been in a while and the mouth is growing,etc. So we rushed to orthodontist and removed it. It just popped right off easily.
Next we went back to surgeon to re-evaluate. It was time for more surgery. A posterior pharyngeal flap, or p-flap. Two surgeries actually. First tonsils needed to come out. The tonsillar tissue is around the area in the back where the p-flap would be and surgeons like it to be gone so tonsils are buried then cause trouble later when they grow or get infected jeapordizing the palate repair. So, out with the tonsils!! As a side note we also had tubes in ears at the same time. Our son never had them put in although surgeon had recommended it at time of first palate surgery. We didn't have an EnT where first surgery was done and didn't feel the risk of anesthesia was worth it given he had no problems with hearing or infections. But since he was having tonsils, ENT said he would look at ears and if there was fluid, place tubes. Well, there was fluid so my boy got tubes.
Without tonsils now and with tubes, we waited 2 months for healing and school to be out and ready for surgery number 2, the p-flap.
NOTE: I will end here and post another about p-flap surgery separately.



- Amanda & Roland