Hello! I'm hoping to connect with others that have children with BWS. My 3 month old was diagnosed six weeks ago. He has macroglossia, hernia, and ear pits. We had a feeding, swallow and sleep study done. His sleep study results were not good. His tongue is obstructing his airway so now he needs a tongue reduction. I'm terrified. Wondering how other surgeries have gone. He will probably have his soon. We meet with the doctors tomorrow to discuss. He also has some mild curving of his ureters, also know as pelvocalietasis. Wondering if others have the same issue. Looking forward to connecting,.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.