Sub Mucus Clef Palate

Daryl - posted on 02/23/2009 ( 5 moms have responded )

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I have a six year old with a sub mucus clef palate and no uvalla. It was discovered after he had his tonsil and adnoids out and I feel the Dr.s should have discovered it before. However he has had intense speech therapy and has adapted well but they tell us that he will have to have palate surgery when he gets a little older when his skull grows a little. Can anyone tell me what this will entail and be like during and after. Thank you for any information.

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Daryl - posted on 05/03/2010

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Thank you for all the responses. It's been awhile since my first post and we have seen the Dr. and they have said he probably won't need surgery because he has done so well with his speech and that is why they usually operate is due to speech problems. Thanks everyone.

Marie - posted on 03/02/2009

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Your son's surgery should be pretty mild and not too involved.  As Emily mentioned, since it is the soft palate, there is no bone involved.  They will use the muslce and skin that is in the area to do the repair.  Mucosa tissue is very "particular" and they have had virtually no success in grafting other tissue to that area.  Basically, all they will do is bring the muscles together.  My son had his soft palate closed when he was almost 11 months old.  He had to have it reclosed when they repaired his hard palate at almost 4 yo.  He seemed to recover quickly and do well.  They generally require a soft diet with no straws or forks for 4-6 weeks.  My son only stayed overnight with both of those repairs and was home the next morning.  Pain is usually controlled well with narcotics.  My son is a crazy boy and refuses even Tylenol.  I would definitely check out WideSmiles.org and CleftLine.org.  They are both very helpful.

Emily - posted on 03/02/2009

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Hi



My little guy has a sub-mucous cleft as well but he had a cleft lip so they checked it right away.  They plan on doing surgery some time after 14mos. if it's required (they'll assess his speech to see).  My understanding is that the sub-mucous surgery isn't too bad - they need to bring together the sides of the muscle above the palate... no bone involved.  This makes the pain much less severe than bone surgery (cleft soft or hard palate).  There's a website called Wide Smiles that may be helpful.

Daryl - posted on 02/24/2009

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Hi Vida,

Thank you for the information and I'm sorry I guess I should have been more specific. I am familiar with hospitals he has has 2 sets os ear tubes already and I myself 29 surgeries. What I was wondering was what do they do to fix the palate, how do they fix it where do they get the bone from? Those kind of things. They are waiting because he is doing okay so far and they felt if they didn't need to put him through several surgeries why do it so they are waiting until it becomes absolutely necessary when his head grows. Hope that explains it to you.

Vida - posted on 02/24/2009

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Hi there, welcome, nice to "meet" you.  :)



It does amaze me that a cleft palate goes undiagnosed for so long, but it does happen at times.  Glad that your little guy has done very well with speech therapy, that's a bonus!



My daughter, now 6 1/2, was born with a wide unilateral cleft lip/palate.  She's had quite a few surgeries by now (7 before age 5, and her 8th was just before Christmas, strictly ear tubes).  Her first palate repair was done at age 13 months.
As far as surgery is concerned, anytime your child undergoes a procedure is going to be difficult, regardless of what is being done.  That being said, be assured that your son will be in good hands, monitored closely.  Communication with the surgeon and trust is essential.
I wish that I could remember the details of my gal's (1st) palate surgery, it's been so long.  She and I stayed in the hospital for 2 nights after that particular procedure.  Feeding her afterwards was difficult, of course.  Pain was kept under control with Tylenol/codeine.
I know that you'll get way more information regarding the palate surgery from someone who has recently BTDT!



When you are in the hospital, make sure to have something special of your son's, a teddy bear, a blanket, something that will be of comfort to him.  My daughter has a special Ducky who has accompanied her to her surgeries, along with a ducky blanket. 
Have on hand lots of change for the vending machines, something to keep yourself occupied while your little guy is in surgery -- a magazine, a notebook, anything.  Be sure to hit the cafeteria for a meal!



Has the doctor given you an idea of when the palate surgery will be done?  I'm not sure of why they're waiting, only b/c of the fact that Vilija had hers at 13 months old.  I realize that growth does play a part in when some surgeries are timed, though.  A pharyngeal flap was done at around age 3-4, that's when the surgeon "built" a bridge of tissue from the back of her throat to her palate to lengthen it.  This is done pretty much for speech purposes, and not all children undergo this procedure.



Sorry I'm rambling... you'll notice that I tend to do that.  ;)



I wish your son all the best!  I love your photo.  :)
Vida

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