What do we do now?? Help!

[Anonymous]

Please help- We have a 3 year old who was born w/ a slight cleft lip. This was repaired at 2 months & a revision was made a year later. His scarring is bad, his nose is getting more uneven. At 2 we searched everywhere to find out why he snored so much & never seemed rested. We were told his adenoids were so large they protruded into his nose & needed to be removed. We did this. At 2 1/2 we found out he has a submucosa cleft palate. His speech seems delayed. The dentist says he will monitor his teeth & will have a graft done between 5&9. We have been all over our area (canton, Akron, Cleveland) & I still don't feel he has gotten the best care. Does anyone know of a team that is good? Akron missed the palate & I have seen pictures of repaired lips done much better than our son's. Cleveland removed his adenoids & tonsils, also never found the cleft palate & now I just read adenoids should never be removed when there is a cleft palate involved! Should he be in speech therapy? We have tried so hard to get good medical care & I feel like we are failing. Please help. If anyone can help in any way please email me at woodrich@writeme.com Thank you so much!

[Anonymous]

hello, only just seen your message so i don't know if you will get this reply. also i live in the uk so i can't help on the issue of hospitals etc. but our son also has a sub-mucous cleft palate. he is 4 months old and it is due to be repaired in 2 months time. we were told that we were unusual for the cleft to be picked up so early because sub-mucous clefts are normally missed and only come to light at 2-4 years with speech difficulties. i don't know much myself about sub-mucous clefts but happy to answer questions if i can. Rosemary

[Anonymous]

Did you ever get connected with anyone? Childrens Hospital in Columbus, OH has an excellent Cleft Palate program. I completed my residency there.