Hi Chantelle
I have posted a description of my son's version of CHARGE syndrome, eveyone seems to be a bit different. My son's surgeries for his bi-lateral choanal atresia were not successful , do you think we should start looking into it again?. He is developing well as a mouth breather but cannot smell as you probably know. Part of me wants to give him the opportunity to do this , the other part of me want to keep him out of hospital and living a life without all that. He is 16 now , going into Grade 12, is deaf in one ear and has 70% in the other, refuses to wear a hearing aid and has never met or talked to anyone with CHARGE. maybe you could offer me some words of wisdom. He is a shy boy and I often wonder how much of this is due to his syndrome.....Thank you, his Mum