disclaimer: I can only say what I think I would do, not tell you what's right or wrong when it comes to your own child.
My daughter was born with a bilateral cleft palate (soft &hard, both gone) Really, no palate at all. Apalatia.
the first consult we did was with a craniofacial surgeon at Boston's Children's hospital, which is supposed to be the best of the best around here. The NICU, geneticists, and peds all bantered back and forth about whether she had Pierre Robin, and as soon as we walked into this guy's clinic, his nurse said there was "no doubt" that she did. Ok. So he came in and looked at her with medical students, (he didn't ask if we minded a bunch of students looking at our newborn like she's nothing but a medical anomaly- I usually don't mind but at least ask, you know?) told them that if she had come in at 18 months, "this palate would never be repaired" (she was only a month old at the time).
His conclusion was that he'd sew her tongue to her lip for a month to allow the palate to grow together more, and then do the surgery.
I cried all the way home because it just sounded so cruel, and we decided to get a 2nd opinion.
The second consult was at Mass General Children's Hospital, and I knew as soon as I walked in it was going to be better. Right off the bat the surgeon told us she did not have Pierre Robin. Then, he told us the technique of sewing the tongue to the lip was a controversial one, and not really proven to help in the long run.
He performed the repair in two surgeries- one at 9 months, and one at 15 months. It was a miracle she didn't need a third. Those surgeries were very, very rough on her. Both times, she refused to eat for a week afterwards. The first time, she dehydrated, her IV was knocked out and they couldn't get it back in, we constantly force fed her breastmilk from a syringe drip by drip around the clock. Awful, awful recoveries. After that second surgery, I said to DH I didn't care if she did need a third- if she needed an obturator the rest of her life, it would've been worth it to avoid that, and I really believe that.
I can honestly say if I were you, I'd stick with the obturator. No, it's not ideal. But you know, I knew a woman who had one, and it didn't bother her at all- she grew up with it, you know? And you could absolutely not tell from her speech. And, who knows what technology will be available in the future for re-repairing palates? AND- you could get a second, or third, or whatever opinion. As you can see, opinions can vary wildly when it comes to craniofacial surgeons.
It is your decision, and I know you will choose what is best for her. I think the best thing you can ask yourself is what would YOU want, if you were her? You know her best.
I'm sorry you face such a difficult decision, no one could judge you either way. it's a very tough choice.
