How do I know what is good and bad for my daughter? My doctor said she has never treated a child with Duarte Galactosemia. Doesn't make me feel the best but there is no one in my area. I could drive to the next big town but I don't want to do that if I don't have to. The doctor said to breastfeed when she was born but she was very sick. Then we were told to not. I worry now that the bonding hasn't been done between me and my baby. This is my first baby and I want to be bonded and not with a bottle. My husband insisted I switch to soy. Now she is much better. So no breastfeeding for me I guess. This is not what I expected. I let the doctor know and got no response.
These are true stories and messages from moms I have received since I began this journey researching DG in 2008. Sadly I didn't start foldering the messages til 2012 but please see that many are in the same boat as you-confused and with many questions. The post is not to answer these questions specifically but to post to record the issues and questions for the public.