Tongue reduction

Hello...My Name is Pasha and I live in Uganda.

I have a daughter that might have BWS..she was born with an omphalocele that was repaired soon after birth.

She also has a large tongue that will soon be reduced. Her tongue reduction will be done in January next year.

This condition is very rare in Uganda and I haven't met anyone with it ...

I am worried about how I will feed my daughter soon after it is done. What special bottles that may be useful, any recommended foods, and any other tips or things I might need to carry to the hospital and need soon after we are discharged.

Thank you

3 Replies

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  • 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?

  • 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.

  • 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...

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