Barts Hemoglobin- genetic abnormality in my baby

TW mention of stillborn, (my baby wasn't it's just mentioned below)

Has anyone's newborn baby came back positive for Barts Hemoglobin? I was told its only seen in 3 in 1000 births and usually babies are born stillborn from it hence why it was so shocking to encounter this in a live baby. He has to see a pediatric hematologist at two months to reconfirm diagnosis, but I guess I'd like either words of encouragement or guidance of what I can expect to happen if you've had this experience before. My pediatrician said in his 52 years of being a pediatrician he's only seen 1 other baby not be stillborn with the condition.