Gloria26 years ago

Check on the fb group of Bws.. all you asked for is discussed there many times.. ask to join.

How old is your daughter? and where are you having the surgery?

Ar01yan6 years ago

Hi Pasha,

My son is now 1year 3month. He is also having same problem.

I can share my experience with you.

After omphalocele we came across same macroglossia problem.

My doctor suggested me that you can go for alternative option that is tracheostomy and gastrectomy.

We have followed the same. My son has almost adjusted the tongue naturally. hope so after some time they will be removing these tubes

You can ask from your doctor.

Joan19766 years ago

My children were tube fed...as stopped breathing due to there tongue if gave bottle..but speech therapist helps to get them feeding..my children eat steady now...