Our daughter was born with a unilateral complete cleft lip that affected her top gum line, but otherswise has an intact palate. She had her lip repaired at 10 weeks, and is due to have her gum repaired this November, right before her 1st birthday. Our PS, who is the associate professor of crainiofacial surgery at a hospital where I love has not had that much experience with this kind of surgery. In fact, his nursr says she cannot remember having a surgery like this. My husband and I are very nrevous about this. We were told she couldn't have any pacifier after the surgery ( she is now officially done with paci) and couldn't use a bottle or sippy cup with a valve after the surgery. I have asked repeatedly what will happen with this surgery, but cannot get a straight answer. After speaking with the nurse the last time, I was told that "this is a very unique case" and it's uncertain, as they haven't had that much experience with it. Normally, according to her, children are either born with CL&P or CP. Does anyone have any advise or experience with this?We were told that she will need a bone graft when she is 8 or 10, and that the bone graft will be taken from her skull. My hubby and I have pretty much decided to look for a new surgeon for her surgery when she's older- it's too late for this one. I need some support and some advise/experience from those that have been through this. Any help is appreciated.
Colleen