Hi
my son is 8 weeks today. he was diagnosed as BWS at birth. his tongue is large, but still he can breath normal and feeds through normal pharmacy bottle. we are living in Sudan. thanks god still there are good quality of medical doctors who can discovered these type of abnormalities. Is it a must he should undergo surgery or he might recover gradually. so far there is no much progress. if surgery is a must any hospital that we can trust in EGYPT, Jordan or we should travel to UK or USA, taking into account the difficulties of getting visa for both countries.
Not all children with BWS have the operation to reduce the size of their tongue. However if your son's tongue is large he should be assessed by a craniofacial team familiar with the condition. If the operation isn't done and the tongue is very large it can cause orthodontic and jaw difficulties in the future. And there is also the problem of bullying etc if it affects his appearance and speech as he grows up. I suggest you ask for a referral to check things out. I don't know what the situation is where you are. In the UK macroglossia in BWS is treated at Great Ormond Street Hospital.
thanks a lot
any doctor who can assess his case in Sudan, Egypt or Jordan and his contact?
Sorry do not have any details of teams not in uk. Other forum members who are from your area may have ideas.
After 6 years my son will have tongue reduction in Swansea hospital in South Wales with Dr Suger
I am so happy for him because he was bullying in school .