Is Tongue Reduction Surgery a must or child might recover by Age?

[khmotalab]

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.

[Songbird63 Administrator BWS Support]

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.

[khmotalab in reply to Songbird63]

thanks a lot

any doctor who can assess his case in Sudan, Egypt or Jordan and his contact?

[Songbird63 Administrator BWS Support in reply to khmotalab]

Sorry do not have any details of teams not in uk. Other forum members who are from your area may have ideas.

[Papymed08 in reply to Songbird63]

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 .

[Bond]

Not at all. Helene was born with an enlarged tongue and now at 3 years old, it seems that her mouth has grown to accommodate. It will of course depend on the size of your child's overgrowth.

[khmotalab in reply to Bond]

thanks a lot, that is good news, my worries about surgery because the quality and frequency of practitioners to do this kind of surgery in my region is not that much. I am afraid he might die during surgery. all doctors who see him looks like it is either their first time or second, except the one who diagnosed him, but he is not a surgeon. he is telling us as far as he is eating and breathing we have to wait. he said he don't have access to information outside. I will wait till 6 months and if not able to accomodate by then I will try to go to UK to do tongue reduction. but anybody can guide me on how to get visa easy to UK?

[Mellyboo in reply to Bond]

Yes, I agree. I have BWS but my parents didn't opt to do the surgery since the doctor said it wasn't really needed and also at that time, my parents were weary about the surgery because they thought it would hurt me, they had told me that it was nerve-wrecking to see me go into the surgery twice for exomphalos repair.

Fast forward the time 26 years later, a part of me did wish that my parents did do the surgery because although my tongue did reduce its size but it impacted the way my jaw and teeth develop. I had a wide gap teeth that kind of pushed forward because the tongue had pushed my bottom teeth to the front. I'm wearing braces now but it's a slow process because the orthodontist is trying to make sure my bottom teeth would straighten and to make sure my teeth won't fall off because of my thin gums on the lower part of the teeth. I didn't know until I went to see the orthodontist for my braces consultation that my tongue had an impact to my teeth and jaw development.

But it all depends on what the doctor said though. I think maybe the case with my tongue wasn't too serious to get surgery? I'm not sure but overall, I'm OK with my parents' and the doctor's decision. They knew what was the best thing to do for me.

[khmotalab in reply to Mellyboo]

Thanks for sharing your personal experience.