Surgeries later on

Children and adults with cleft lip and/or palate issues

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Surgeries later on

Postby Aidyl » Wed Jun 11, 2008 9:46 am

Hey all...just had a question. My son is 3 and had his surgery for his cleft palate when he was 10 months old. We've been back for check-ups every year. This past time they talked about the possibility of having to do another surgery later on (sometime between the ages of 7 and 11) and talked about having to take some of the hip bone and placing it in the palate area.
Has anyone else already been through that? Does it happen more often than not? Does everyone pretty much have to have it? How were your children when they did go through it? I wonder because as a baby he didn't have any apprehensions or anxieties because of his age and I wonder how he will do in a few years.
Any help would be greatly appreciated.
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Postby Bailliejo » Wed Jun 11, 2008 10:46 am

My son is 10 months old so we haven't even had his palate repaired yet. But when we went to his first cleft team meeting when he was a week old they told us about putting bone up in his gum line so there is not a hole in his gum line. They called it a bone graft, they said that they would do it around 7 years of age. I have talked to some moms I know about the bone graft that have had there kids go through it already and they told me that their kids said that the hip hurt worse than the mouth but they did great. Hope that helps.
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Postby Aidyl » Wed Jun 11, 2008 2:16 pm

Thanks so much for the information. I look forward to hearing more and hope that your little one is doing fine.
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Postby Bailliejo » Wed Jun 11, 2008 4:04 pm

I had one question for you. I was wondering when your little one started to talk. My son only says ma ma right now and I didn't know when he would start talking?
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Postby Babyk » Thu Jun 12, 2008 7:20 am

Our surgeon also mentioned a bone graft somewhere down the line for Avery as well. I think it all depends on how open the palate is and if the gums don't come together on their won, which I understand is possible if the gap is not too wide.

Keep us updated on what happens next.
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Future Surgeries

Postby LanesMemee » Thu Jun 12, 2008 1:47 pm

Hi! If the cleft went into the gum line, where there should be teeth at some point and there is a open space or gap where the gums are not connected, there is usually a bone graft surgery around age 7,8, or so. Some surgeons use a bone product to bridge the gap and some take a piece of bone from the child's hip and places that in the gums to close the gap.

For children with bilateral cleft lip and palate, there is often a jaw distraction procedure around age 17 to move the upper jaw forward for proper alignment with the lower jaw.

Did your child have a cleft palate only?
Daphne Sellers, Grandmother to Lane, 23 months old, BCLP
Alabama
Daphne Sellers,
Grandmother to Lane, 6/29/06, BCLP
Wicksburg, Alabama
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Postby Aidyl » Fri Jun 13, 2008 7:24 am

Sorry it's taken me so long to reply. I have been busy this past week. Along with my 3 year old we also have a 17 month old and a 6 month old and the 6 month old has had a bit of an earache this past week.
So I'll try to answer the questions.
As far as Quinten being able to talk he seemed to take a little bit longer to me than I would have hoped but seemed to do ok because my doctor never scheduled us to see a speech therapist. He called me "Da" for a loooong time..don't know what that was about. But my husband and I worked with him alot and we lived by my folks so my Mom was there to help out as well. Last year at his yearly evaluation with the cleft team I had videotaped him saying words and doing his ABC's and the speech therapist was so impressed with what he could do and say that she said that usually she sees children every 6 months but that he wouldn't have to be seen again until his next yearly check-up for which I was thankful. This past time (which was a week ago now) she thought he did well and that if anything his speech "problems" were age related...you know, the mistakes most 3 year olds make.
Now as to his cleft problem. It was only his palate...his lip and gum line were not affected. It was his hard and soft palate.
We had his surgery done at Vanderbilt in Nashville, Tenn. We lived in Tn at the time. Now we live in South Carolina and see a team in Charleston. Not everyone was there this past time and so I wasn't able to ask some people certain things so I'm looking forward to going back and having a whole set of new questions.
I hope and pray that he won't have to have any other surgery the rest of his life. I don't like seeing my children going through something like that, but I know that if he has to that God will see him through and that it's all for his best.
Thanks so much for the help in the answers.
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