Hi. I am very thankful I found your page. My daughter is 3 weeks old. At first we were told maybe she was only a carrier but to stop breastfeeding in case. Now at our 2 week check up we were told she was indeed Duarte variant. When I ask if I can breastfeed again, cause I had been pumping and storing, they said we think you can. You think? Shouldn't they know? So I went back to breastfeeding. She had no symptoms so all seemed okay. But my gut told me I needed to get a second opinion. So I went to a specialist almost 3 hours away. The specialist looked at me like I was a monster and said "Why would you be breastfeeding a DG baby?". I was told all the new info on how my child can have speech, sensory, and other issues later in life. I felt terrible. Why did the first doctor not tell me that. But my baby seems fine. The specialist said many times you don't see the damage being done to their insides especially the liver and brain. Now I feel like a terrible parent. Why do these doctors not all know this already. We trust these doctors to have information on all these childhood diseases. Just a shame. I hope this post helps other moms earlier instead of later.
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.