My name is Gemma i live in bham with my son kayne who is 6months old and my 2yr old daughter kaycee. Kayne is currently being queried for charge syndrome. he was born on 7th august 09. at my 20wk scan they detected cleft lip and palate so i was prepared for everything visualy, it wasnt til he was born that he then started producing other problems with feeding and breathing. he is ngtube fed by a pump as he cant handle large volumes of food. he is currently awaiting his 1st cleft surgery due to the original date being cancelled. we have since been to see a genetics councillor who is 80% sure he has charge syndrome but wants to confirm this by taking a blood sample when he goes under for lip repair as well as a throat scope for a trachial tug, and they will check for caloboma. we have been told that we will wait 3-4months for results. i was wondering how long other people may have waited for results?? also is there any1 in the bham area with a child with charge?? kayne also has very floppy muscles, he doesnt move around much and is about 3months behind in develpment, he has all the general charateristics of a charge baby, ie, moderate hearing loss in both ears, abnormal outer ears, large eyes and forehead, a small hole in the heart, oesophagal reflux, micropenis and undecended testicles. i was wondering if anybody knows of any support groups in the birmingham area?????? it is lonely sometimes and it would be great to talk to someone who is having the same sort of feelings and emotional rollercoasters as what i am?