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Raising Special Needs Kids Raising Special Needs Kids

Cleft Palate Surgery?

Posted by on Sep. 20, 2013 at 11:52 AM
  • 12 Replies

My 2 1/2 yr old son has recently been diagnosed with submucous cleft palate. It has been recommended that we do surgery to repair the cleft due to speech issues. It does not affect him in any other way other than the understanding of his speech. I'm a bit nervous. Although I do not want him to go through life unable to speak clearly, I'm afraid the surgery maybe unnecessary? I was just wondering if anyone else has had experience or knowledge of this procedure?

by on Sep. 20, 2013 at 11:52 AM
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Replies (1-10):
mandee1503
by Amanda on Sep. 20, 2013 at 12:21 PM
No experience but here's a bump!
darbyakeep45
by Darby on Sep. 20, 2013 at 5:15 PM


Quoting mandee1503:

No experience but here's a bump!
Posted on CafeMom Mobile
Momof4AEMW
by Gold Member on Sep. 20, 2013 at 8:47 PM

No directly with my kids, but my husband had it when he was very little, I think around age 2.  He's had a full recovery, eats normal, talks normal, everything looks normal, etc.  The only thing he notices is sometimes he burns the roof of his mouth easily on hot foods that don't seem so hot to other people.  Hope everything goes well with your son.

letstalk747
by Joy on Sep. 21, 2013 at 12:04 AM

i dont

golfqueen123
by Bronze Member on Sep. 21, 2013 at 12:06 AM

My son is 6 I think we've spoke  before, but they told us they want him to do 6 to 12 more months of as muchspeech therapy as he can and then they would  re evaluate him and see wheres he's at. Since he can make some of sounds with the submucus cleft palate they don't want to do a surgery since they can't guarantee it will help him. It gets a little frustrating because we want him to speak so bad, but you don't want a surgery if it is really not going to make a difference!? Hang in there it's a hard call!

megandwade
by Member on Sep. 21, 2013 at 11:36 AM

Thanks for the replies everyone!

Golfqueen, We have talked! I couldn't remember you screen name! :) I'm so glad you found me again!

At a recent appointment, they've recommended we need to go ahead with the surgery. They pretty much have told us our son will never be able to speak clearly with out the procedure, but I still just have a feeling the doctors maybe wrong. He's gone from not communicating at all to using full sentences within months! He's made such huge leaps and bounds within the past few months I just think, what if his speech continues to get better. I can understand him the best, his father some, but most of the family has a hard time comprehending him. I guess I'm kind of in denial about how hard he is to understand because I can understand him fairly well. I see no physical evidence of the cleft other than his issues with speech.

It has been pointed out to us the sooner he receives the surgery the better as the way he communicates will become habit, and once he is set in the habits, they will be harder to change.

Still, I'm afraid the complications of the surgery may out weigh the positives?

I have until Oct 7th to decide weather or not we go through with the surgery.

The thing that really bothers me is this is suppose to be one of the most common birth defects and a pretty common procedure yet I have not found anyone else who has experience with it. One or two ladies have said their SO had the procedure as children but their are no online support groups or anything that I have found for parents experiencing or having knowledge of the procedure! There are many cleft lip/palate support groups but no one with knowledge of the submucous cleft speech related issues.




Quoting golfqueen123:

My son is 6 I think we've spoke  before, but they told us they want him to do 6 to 12 more months of as muchspeech therapy as he can and then they would  re evaluate him and see wheres he's at. Since he can make some of sounds with the submucus cleft palate they don't want to do a surgery since they can't guarantee it will help him. It gets a little frustrating because we want him to speak so bad, but you don't want a surgery if it is really not going to make a difference!? Hang in there it's a hard call!



megandwade
by Member on Sep. 21, 2013 at 11:39 AM

That's good to know he had a full/successful recovery. I have not been able to find anyone who has knowledge of this procedure! Does your husband have any memories of the procedure? I suppose 2 is pretty young!


Quoting Momof4AEMW:

No directly with my kids, but my husband had it when he was very little, I think around age 2.  He's had a full recovery, eats normal, talks normal, everything looks normal, etc.  The only thing he notices is sometimes he burns the roof of his mouth easily on hot foods that don't seem so hot to other people.  Hope everything goes well with your son.



lancet98
by Member on Sep. 21, 2013 at 11:43 AM

 

You doubt what the doctors are telling you because he is using longer sentences, and yet even most of his own family can't understand him?

If the pronunciation is not improving hugely, he needs the surgery.   It does him no good to be able to compose longer sentences if no one can understand him.

In my experience (only a couple kids over the years), the docs were extremely unlikely to recommend the surgery unless the child really needed it.   and with all the kids I took care of who had it done, the results were absolutely stunning.

Quoting megandwade:

Thanks for the replies everyone!

Golfqueen, We have talked! I couldn't remember you screen name! :) I'm so glad you found me again!

At a recent appointment, they've recommended we need to go ahead with the surgery. They pretty much have told us our son will never be able to speak clearly with out the procedure, but I still just have a feeling the doctors maybe wrong. He's gone from not communicating at all to using full sentences within months! He's made such huge leaps and bounds within the past few months I just think, what if his speech continues to get better. I can understand him the best, his father some, but most of the family has a hard time comprehending him. I guess I'm kind of in denial about how hard he is to understand because I can understand him fairly well. I see no physical evidence of the cleft other than his issues with speech.

It has been pointed out to us the sooner he receives the surgery the better as the way he communicates will become habit, and once he is set in the habits, they will be harder to change.

Still, I'm afraid the complications of the surgery may out weigh the positives?

I have until Oct 7th to decide weather or not we go through with the surgery.

The thing that really bothers me is this is suppose to be one of the most common birth defects and a pretty common procedure yet I have not found anyone else who has experience with it. One or two ladies have said their SO had the procedure as children but their are no online support groups or anything that I have found for parents experiencing or having knowledge of the procedure! There are many cleft lip/palate support groups but no one with knowledge of the submucous cleft speech related issues.

 

 

 

Quoting golfqueen123:

My son is 6 I think we've spoke  before, but they told us they want him to do 6 to 12 more months of as muchspeech therapy as he can and then they would  re evaluate him and see wheres he's at. Since he can make some of sounds with the submucus cleft palate they don't want to do a surgery since they can't guarantee it will help him. It gets a little frustrating because we want him to speak so bad, but you don't want a surgery if it is really not going to make a difference!? Hang in there it's a hard call!

 

 


 

Momof4AEMW
by Gold Member on Sep. 21, 2013 at 11:58 AM

No, he does not remember it.  I haven't heard of anyone else with it either.  I don't think it is very common.  And that surgery was 36 years ago.  I'm sure it is even more advanced now and probably done so much better. 

Quoting megandwade:

That's good to know he had a full/successful recovery. I have not been able to find anyone who has knowledge of this procedure! Does your husband have any memories of the procedure? I suppose 2 is pretty young!

 

Quoting Momof4AEMW:

No directly with my kids, but my husband had it when he was very little, I think around age 2.  He's had a full recovery, eats normal, talks normal, everything looks normal, etc.  The only thing he notices is sometimes he burns the roof of his mouth easily on hot foods that don't seem so hot to other people.  Hope everything goes well with your son.

 

 

 

megandwade
by Member on Sep. 21, 2013 at 12:18 PM


Thanks for the input!

I doubt the doctors because at 18 months they told us he had Autism, around 20 months they told us he had a rare eye condition called Megalcornea, and then they told us he had Stickelers Syndrome. I've put him through so much testing and so many different evaluations and everything they've had us worried about turned out to be wrong...  the doctors have been very wrong in the past. That's what makes me slightly concerned that maybe they're wrong about this procedure as well.. and this isnt just testing and poking this is a surgery that list complications like needing Tracheal Intubation and Airway Blockage. 

I do feel that his speech is improving greatly. He's gone from not talking at all to using full sentences in just a few months. I thought that was a huge improvement! I guess that's where my concern is. He's made such huge improvements in such a short period of time I feel that if he continues to improve his speech will get better? Aren't all 2 year olds some what hard to understand?

I'm really excited to hear that you have encountered kids who have had this surgery done with positive outcomes! That's exactly what I am looking for.. as I have not been able to find anyone who has even heard of this procedure!

Thanks Again!

Quoting lancet98:


You doubt what the doctors are telling you because he is using longer sentences, and yet even most of his own family can't understand him?

If the pronunciation is not improving hugely, he needs the surgery.   It does him no good to be able to compose longer sentences if no one can understand him.

In my experience (only a couple kids over the years), the docs were extremely unlikely to recommend the surgery unless the child really needed it.   and with all the kids I took care of who had it done, the results were absolutely stunning.

Quoting megandwade:

Thanks for the replies everyone!

Golfqueen, We have talked! I couldn't remember you screen name! :) I'm so glad you found me again!

At a recent appointment, they've recommended we need to go ahead with the surgery. They pretty much have told us our son will never be able to speak clearly with out the procedure, but I still just have a feeling the doctors maybe wrong. He's gone from not communicating at all to using full sentences within months! He's made such huge leaps and bounds within the past few months I just think, what if his speech continues to get better. I can understand him the best, his father some, but most of the family has a hard time comprehending him. I guess I'm kind of in denial about how hard he is to understand because I can understand him fairly well. I see no physical evidence of the cleft other than his issues with speech.

It has been pointed out to us the sooner he receives the surgery the better as the way he communicates will become habit, and once he is set in the habits, they will be harder to change.

Still, I'm afraid the complications of the surgery may out weigh the positives?

I have until Oct 7th to decide weather or not we go through with the surgery.

The thing that really bothers me is this is suppose to be one of the most common birth defects and a pretty common procedure yet I have not found anyone else who has experience with it. One or two ladies have said their SO had the procedure as children but their are no online support groups or anything that I have found for parents experiencing or having knowledge of the procedure! There are many cleft lip/palate support groups but no one with knowledge of the submucous cleft speech related issues.








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