I am back from the appt. She has a few "soft" signs of neurofibromatosis or possibly another disorder. One of those soft signs is the darker inner thigh pigmentation that I also have, and I don't have neurofibromatosis (that we are aware of). The other soft sign is that she has a large-ish head. That isn't too big a concern since all 4 of our kids have large-ish heads at this age. Our son has a massive head, his nickname is Charlie Brown Head. And obviously the strange chimera like cafe au lait spot is a concern. So we just have to watch and wait. There is reason to hope that she is just fine. But we will have a follow-up in 18 months to see if anything has changed and warrants concern. I suppose I could have genetic testing to see if I have neurofibromatosis, but that wouldn't entirely eliminate the possibility that she has/doesn't have the condition no matter the outcome of the test.
I wish my mom recalled more about me as a baby and that I was in contact with my father's family. I believe that this darker pigmentation is common in that side of the family. American indian skin pigmentation hasn't been studied extensively, especially since it can vary so widely in different areas of the country. I may have had the same darker area on my belly as a child. But I had a massive 3rd degree burn across my midsection when I was about 4-5 years old, so if it was there it isn't there anymore. I didn't have any medical care for the burn, so I don't have any records of how my skin was at that time.