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Cleft Palate - Pierre Robin?

Adriamichelle83Adriamichelle83 member
in Special Needs
Hi, I had my LO on Wednesday morning, and we found out that she had a rather deep cleft palate, associated with the condition Pierre Robin. It is an isolated condition, thank goodness, no other abnormalities are involved. This went undetected throughout the whole pregnancy, so when she was born and they told us about it, it completely floored us. Is there anyone on this board that has experience with this issue? We won't be able to have surgery for her until 6-9 months, until then, it's a day by day scary as hell process. Any advice would be greatly appreciated! :)
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Re: Cleft Palate - Pierre Robin?

  • smitty22smitty22

    Hi,

     Congrats on your new LO. My LO doesn't have pierre robin, but he does have a similar condition called Treacher Collins Syndrome. He is now 4.5 months. If you have any questions or just need to talk please let me know.

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  • Susie2005Susie2005 member

    My DH, now 36,  was born with a cleft palate associated with Pierre Robin.  He had surgery to repair the palate and one additional surgery a little later (not sure of the details).  But, you would never know he had any issue at all.  Completely happy and healthy.

    Congratulations on your new baby.  Best wishes dealing with his recent diagnosis.

    Susie, mom to DS 4/10/07 and DD 3/6/09 (MC 9/05, 2/06) Lilypie Fifth Birthday tickers Lilypie Second Birthday tickers
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  • rsd12rsd12 member

    Congratulations on your baby!!

    My first was born (he is 3 1/2 now) with a unilateral complete cleft lip/palate but not Pierre Robin - his cleft was isolated.  But I can talk you through any palate surgeries ; ) I know on u/s before they are born it is almost impossible to see a cleft palate.  Cleft lips are a lot easier to see, so we knew he was going to be born with a cleft lip & most likely a cleft palate too.

    My son had his palate surgery at 11 months, & he healed beautifully from it.  His gap went all the way through to his nasal passage - technically he had a bilateral cleft palate.  I could not nurse because he could not suck.  We had special bottles that were great.. they mimicked the sucking motion.  It took a little while to get the hang of it, but once he/we did he ate like a champ.  They were called a pigeon bottle from Japan.  I would have to look up the Web site I ordered them from if you are interested.  It's been a while.  He had no problems eating solids once we were able to start them. He does have articulation problems due to the cleft - so something to keep in mind as I am sure you will get started with Birth23 or something similar in your area.

    I could go on & on..

    Feel free to email me if you have any questions about the palate - sugery, feeding, speech.. robyndelaney at sbcglobal dot net

    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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  • teacher27teacher27
    My almost 6 month old has isolated Pierre-Robin and like you we didn't know she had any issues until birth.  She had a jaw distraction at 6 days old and while it was a scary surgery it was very worth it to us.  She is on a sleep apnea monitor and has OT and PT weekly but overall is doing really well.  She will have her cleft repaired around 13-14 months.  Please feel free to email me meagandonnell@hotmail.com  I know that it is such a scary time and I would have loved to be able to talk to someone who had been through what we were going through.
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