Oh Sweetie do i ever feel for you on this. I have just hooked into this forum, and had no idea it was even around, but am i ever glad. I have probably the mildest case of TCS, and it was only made known to me as i had extensive xrays and was found to have clefts in the mandible(jaw) but this wasnt done until after the birth of my first two children, who have quite pronounced TCS. M 18 Year old daughter has had the aw operation, along with many other bone grafts to facial clefts over the course of the last 12 years. If you would like to write to her personally, she can tell you first hand what the operations are like. froggy_baby20@hotmail.com is where she can be reached if you would like. Her name is Erinna.
We understand fully about the public and their rude remarks, stares, deductions etc, over the last 18 years i cannot recall a comment not being made, Ive heard them all, and grieved a great deal. I have never had family support, as I emigrated to Australia from NZ in 1979, before i knew of this condition, within myself. It wasnt till 83 when Erinna was born it was revealed to me. My parents dont appear to have any anomolies, and are too far away to be a support even so. We have borne up under this, both as a single parent family, and more recently since my remarriage, with a husband and stepdad. Quite miraculously my Husband and i had three children, born with no TCS.
I would and we would be happy to hear from you. Their is so little contact with other ppl available here, as Hospital staff dont divulge information. One thing I can say though, this hospital here, and the maxillo foundation is a world leader, under Mr David David. A life saver for Erinna who was on a CPAP machine for years, before the jaw was done. There is much more to say, and I would be so grateful for your communication, its one thing to have good surgeons and plenty of knowledge, but it is another to have contact with others who Truly understand.