We met with the facial doctor today in Boston. After dealing with insurance hassle for the last number of weeks and being denied our request to go to Childrens, the pedi told us to try Tufts since they don't require any referral. Of course MIL wasn't happy about this news. She said she took dh there first when he was little and they wanted to do experimental surgeries on him. I told her that likely things have changed in the last 35 years (well I would hope they would have) and that we had no choice since I am not paying out of pocket for her to be seen at Children's. Personally I prefer Children's too since I hate driving to Tufts even more than I hate driving to Children's, but it isn't worth paying thousands of dollars though.
It was bad traffic going into Boston (even though it was midday) thanks to the left lane being closed. So it took us an hour and a half and then we had to wait an hour after our appointment time for the doctor to enter. All this made dh mad, but I told him this is what you have to deal with when seeing specialists. He doesn't know because he didn't come to all of dd1's appointments. I know if I am going to Boston it is an all day affair.
Chloe was also not very happy either because for 2 days now in a row she had to have doctor appointments and that meant no sleeping on her mat on the floor. Yesterday she had her renal u/s which thank goodness that was all normal. It is good because we already had to deal with all that with Caitlyn and Chloe has already gotten enough of the short end of the stick medical wise already.
I showed the doctor dh's childhood pictures and talked about his surgeries (which we only knew very limited about since dh was too little to remember much and I only get the 2nd hand account from his mother). We are lucky though that we do have his history to know that there is something abnormal there with the baby and to push for treatment.
The doctor says that she has a form of Binder's syndrome. Basically the main characteristic is a lack of nasal bone and that is the case for her and dh. This causes the nose to be broad and flat. Reading online it also says that the columella (this is the middle part between the nostrils which MIL says is the main problem with dh) is short and also the mouth is slanted downward. At first I thought no her mouth isn't downward, it is pulled up, but then I recalled the baby picture of dh that is the same face as the baby and the upside down U mouth and I can see what they are talking about.
The good news is that Binder's syndrome seems to only be a facial cosmetic problem - it doesn't appear to cause other issues beside the nose and upper jaw. The bad news is that she faces surgery (likely many) to correct things and if things aren't fixed by kindergarten age there is also the bullying factor as well. There is also the concern of this coming out in future generations since we know with her it is genetic. This I feel the worst about. Knowing that my grandkids may also face the same problem.
Right now though we are just playing things by ear. The doctor said it is up to us when we want to decide to correct it, but it is best to wait longer and do less surgeries. We go back at the end of September and then it will likely be check ups every 6 months after that.
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