I am going to come at your  concerns from another condition but which has the same questions regarding the timing and need for further cosmetic surgery after 2 cranial surgeries for medical needs at 6 & 10 months my son had.  At birth Liam's sutures on his skull were all fused and his frontal  suture was an inch apart which has pulled his eyes  down and he has an extra 1cm  spacing at the bridge of the nose from the' norm'. 

With the sutures normally open for 15-18 months to allow for the rapid growth of the brain there was no question about the need for the two sets of surgery.  The frontal suture could not be corrected because the eye sockets would have been in danger so he has no brow and his head is wide above the eyes. 

Liams looks different and he has always been aware of it because wherever we go in public 95% of people do a double take and will basically stare.  He knows the "look " because it is the same on everyone and if he catches someones eye will just smile and say hello.  He fully understands his conditions and will explain them(CAH included) to anyone without being self-consious.

He had a tough time at school last semester and has not been impressed by his classmates interest in appearance here in the US(3rd grade!).  He has endured more teasing than he has in the past with kids calling him Frankestein and ugly but he has impressed me with his attitude and stoic demenor. Teasing is not a suprise to him because I have always told him that kids will tease him but he is to independent to ask for help which does not help his cause..  I had a few run-ins with the school and am looking for a major improvement in their management of his situation in the fourth grade. 

Liam cannot hide his "imperfection" and has to deal with it everday 24-7.  He could have additional surgery now if he wanted it but he knows that he will have to have further surgery once his skull stops growing.  Any cosmetic surgery done before a child stops growing will need corrective surgery once growth stops. Perfect surgeries do not happen because growth is unpredictable and unique.   More relevant is that surgical practice is  basically always experimental guess work done by doctors desperate for more experience.  I have a general distrust of any surgeons recomendations.

Before Liam's second operation the lead consultant gave us a detailed run down of what he was going to do during the 4+ hr operation.  Liam came into the surgical ICU after 5 hours but had to be sent back into theater for another 2.5 hours. A nurse later told us that the training surgeon did the first surgery and had cut through some blood vessels that were not then tied off correctly.  We were not happy about being mislead and raised a storm.

If I had to bet  on whether or not Liam will choose to have reconstructive surgery at 18-19 today I would have to bet against him having it.  He does not have a problem with how he looks and is not self consious when out and about.  I am and he is proud of himself and he suprises me most days. 

Janet's post is more relevat and offers her take and I concure with her.  Other parents who did not have the surgery done have posted in the past and expressed their suprise at how much there child grew into their supposidly abnormal genitalia.  This debate is very polarised but I do not beleive for a second that parents who have decided that their daughter needed the surgery did it because of possible public humiliation.  Black and white decisions do not exist.  Any decision made today with the information available to the person concerned objectively thought through is correct.  New information and facts learned at a later date do not make that initial decision wrong.  The initial decision was made in good faith and any problems parents may have or will face with their daughters questioning surgery done should focus on that.

Having re-read the post I do not know if this offers you anything Kaye but the fact that you are asking questions will ensure you will have enough information to make an informed decision.  TC

ShaunP.