Hi im new here. My baby girl is 3 months old. When I had my 12 week pregnancy scan we were told she had Examphalous. She was born 20 november by emergency c-section due to other complications. She had a very succesful operation at 3 days old. While we were in hospital we were told she could have BWS as she had earpits in both ears & a slightly enlarged tounge. We got the results last month which confirmed she did have BWS. We seen the genetic doctor a few weeks ago who expllained to us that she has mild BWS & will need to be screened until 2 years old. Everyone i talk to about this have never heard of it, (neither had I) not even my doctor or healthvisitor had heard of it. I live i the UK, Carlisle Cumbria.