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cleft palate and hearing loss mommies

Kim0516Kim0516
in Special Needs
Anyone whose baby has a cleft palate?  I wanted to hear some cleft stories and to share mine. My LO was born with isolated cleft palate and mild to moderate hearing loss. Wanted to see if anyone else outthere with similar issues
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Re: cleft palate and hearing loss mommies

  • PinkyJo411PinkyJo411

    My Daughter was born with a cleft in her soft palate only. She actually has Pierre Robin Sequence.

    She was in the NICU for almost month after birth. She wasnt able to leave until she ate or got a G-tube put in..so she got the G-tube and came home! She has seen millions of specialist, surgeon, geneticists, eye dr., ENT... She had surgery on Jan20th to have her G-tube replaced with a Mic-key and tubes put in her ears.

    March came and her ped dr said we could take her feeding tube out!!! That was amazing. She has only had success..never any fall backs, thank goodness!

    She saw her surgeon the begining of July and he said we can go ahead and schedule her palate repair for when she is a year! (a couple months from now)

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  • rsd12rsd12 member
    My oldest (4 1/2 yrs) was born with an isolated complete cleft lip/palate. We have been through some surgeries with him already to repair the lip & palate.  He has had problems with hearing due to fluid in the ears (tubes helped) & is on nasal spray - but not severe hearing loss.  I would be happy to talk to you about any palate concerns. 
    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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  • Kim0516Kim0516

    Thank you! Did he have hearing problems from birth? Mine failed his newborn hearing screnn. Then later passed on ear but not the other

     

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  • rsd12rsd12 member

    He at first failed in 1 ear, but was retested and passed with both.  How old is your son?  Have you met his craniofacial team & what do they suggest? 

    While my son passed his hearing, what a difference tubes made!  He responded before tubes, but most likely heard "under water".  After his tubes were put at 3 months in he jumped & startled at sounds!  We are still battling hearing issues & considering inserting tubes again at his next surgery.

    Feel free to ask me any questions!

    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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  • Kim0516Kim0516

    my son is two months old. he failed newborn screen and last month he had ABR and shown moderate hearing loss.

     Did yours had any water in his ears before the tubes were put in? They told me mine does not have water and so there is no need to put the tubes in before his surgery.

     Could you tell me about your son's speech? Did he start talking shortly after the surgery?

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