Hi I'm Josh, my daughter has BWS. She was born with omphalocele, has large tongue, ear crease, and really tall for her age. I'm so worried about her. I've stopped seeing her pedia because he's never said anything helpful. I feel like my baby is the only person in our country who has this syndrome. I have lots of questions in my mind, i have no idea what to ask first or what. I've read posts from other members and I feel a bit relieved.
Another worry that I have is that of having developmental delays; do all children with BWS have developmental delays? or what is the incidence of BWS children having developmental delays? Do you think tongue size will be at its normal size soon? like could it be possible for it to just fall into place and wont need a surgery?
My baby's tongue right now looks like that at the picture; I have lots of questions and I dont which one to ask so can you tell me something about her tongue? Do tongues this size at this age will get bigger as she grows?