I have not seen any pictures of babies with cleft lips in all of the CdLS literature I've come across. Is it because it's not so common, or have the lips been repaired early enough before all the pictures were taken? My daughter also has a cleft palate, which I hear is fairly common.
I would say that cleft lip with CdLS is extremely rare, although I have seen it on occasion. It's likely that when it occurs it could even be unrelated (just by chance), and more likely if there were a family history of cleft lip and/or palate. I would encourage her to be managed by a local cleft palate team (sponsored by the state and usually affiliated with a hospital that has experience with children).
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