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Cleft Palate Surgery


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  #1  
April 6th, 2007, 11:09 PM
Epi_rush's Avatar Platinum Supermommy
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If you have experienced the palate surgery or if you're waiting for your child's palate repair, please let us know about it.

My daughter will be having her repair around her first birthday and I admit that I'm terrified for her. I would love to hear from other moms about the pain that their baby had, how the recovery process went over all, if they'll have to have additional surgeries, etc. Any and all information would be great!
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  #2  
April 7th, 2007, 11:24 AM
mk513's Avatar Nick's Mommy, Marianne
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Quote:
If you have experienced the palate surgery or if you're waiting for your child's palate repair, please let us know about it.

My daughter will be having her repair around her first birthday and I admit that I'm terrified for her. I would love to hear from other moms about the pain that their baby had, how the recovery process went over all, if they'll have to have additional surgeries, etc. Any and all information would be great![/b]
My best friend's daughter who has the Pierre-Robin sequence will be having her soft cleft palate repaired on May 1st (@ almost 10 mos), tubes put in her ears and her tongue-lip adhesion released. Soon after, they hope to be able to remove her g-tube. I will talk to her about joining, especially since there is a forum dedicated to cleft palates and the issues related to them.
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  #3  
April 7th, 2007, 12:24 PM
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Quote:
Quote:
If you have experienced the palate surgery or if you're waiting for your child's palate repair, please let us know about it.

My daughter will be having her repair around her first birthday and I admit that I'm terrified for her. I would love to hear from other moms about the pain that their baby had, how the recovery process went over all, if they'll have to have additional surgeries, etc. Any and all information would be great![/b]
My best friend's daughter who has the Pierre-Robin sequence will be having her soft cleft palate repaired on May 1st (@ almost 10 mos), tubes put in her ears and her tongue-lip adhesion released. Soon after, they hope to be able to remove her g-tube. I will talk to her about joining, especially since there is a forum dedicated to cleft palates and the issues related to them.
[/b]
There was talk of the Pierre Robin in Beth too because her lower jaw was so small at birth and is still recessed a bit. I talked with her nurse a couple of weeks ago because I've noticed that she can't stick her tongue out and they told me that they used to clip or release the tongue underneath but she wasn't sure if they still did that or not. They're still not positive on the PR with her since she seems to have grown out of it a bit. We'll know more when we see her palate team again in a few months.

Has her baby had a lot of ear infections or loss of hearing that you know of? I didn't know if the tubes were a precautionary thing or if she's having troubles. I've heard of the tubes being placed as precautionary, but I don't know how often that's done.

Please tell your friend! I'd love to hear about her experiences. I'm sure she would be a valuable asset to this forum! Thanks!
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  #4  
April 7th, 2007, 03:26 PM
mk513's Avatar Nick's Mommy, Marianne
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The baby was born FT last July and was not released from the NICU until just before Halloween, largely due to her apnea issues. The pulmonary doctors refused to allow them to put her on her stomach to sleep (because the pulmonary doctor is one of the "leading experts" in SIDS), even though the craniofacial doctors recommend it in PRS babies. So they did the tongue-lip adhesion, where her tongue was surgically attached to her lower lip, in an attempt to make her breathing passage clear. It helped, but didn't fix the apnea issues, because she still had a normal sized tongue with a small jaw. So they had to do the jaw distraction surgery, which brought her to an "acceptable" sleep apnea level.

Her hearing has been tested and they feel confident that she is deaf in one ear and that it is NOT due to fluid; the other has hearing loss but they feel that it IS attributable to fluid. So to the best of my knowledge, they're doing it in the hopes that it will at least give her hearing in one ear...and are hoping that they are wrong about the other ear and the tubes will help.

I sent her an e-mail and I hope she decides to join! Best of luck to you & your baby.
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  #5  
April 7th, 2007, 07:19 PM
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The baby was born FT last July and was not released from the NICU until just before Halloween, largely due to her apnea issues. The pulmonary doctors refused to allow them to put her on her stomach to sleep (because the pulmonary doctor is one of the "leading experts" in SIDS), even though the craniofacial doctors recommend it in PRS babies. So they did the tongue-lip adhesion, where her tongue was surgically attached to her lower lip, in an attempt to make her breathing passage clear. It helped, but didn't fix the apnea issues, because she still had a normal sized tongue with a small jaw. So they had to do the jaw distraction surgery, which brought her to an "acceptable" sleep apnea level.

Her hearing has been tested and they feel confident that she is deaf in one ear and that it is NOT due to fluid; the other has hearing loss but they feel that it IS attributable to fluid. So to the best of my knowledge, they're doing it in the hopes that it will at least give her hearing in one ear...and are hoping that they are wrong about the other ear and the tubes will help.

I sent her an e-mail and I hope she decides to join! Best of luck to you & your baby.[/b]
I'm sorry to hear about her ears, I hope the docs are wrong! As for the tummy sleeping issue, I found on my own that Beth slept best on her tummy because she couldn't breathe on her back. Even if her pedi had told me not to do it, I would have anyway because it was the only position she could sleep in without suffocating. Granted, I kept a close watch on her at night, but what else were we supposed to do?

I understand what you mean now about the adhesion, sorry about that. It made me think of the issue that we have right now and I guess I got caught up in that.

Best of luck to your friend and thanks for the responses. I hope she joins! Keep me posted otherwise, please?

Thanks again!
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  #6  
April 19th, 2007, 11:55 AM
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This board is great!!!!

My nephew who is 8yrs old now was born with a cleft lip and Plate.. Around 3 months of age he has his first surgery which was too repair his lip, It went great!!! He did have too wear a device before the surgery too pull his lip close together. Let me add he had a Unilateral (sp) cleft lip. You couldnt even tell that he had a scar after surgery they did a wonderful job. around the age of 7months too 1yr he had his plate repaired. During this procedure they also put tubes in his ears due too ear infections and fluid from the plate opening getting in his ears. The surgery went very well his plate(the hole in his plate) was about as thin as your fingernail and went stright back, During that time he also had his tonisiles out because he was having alot of trouble breathing all went well, he had too attend a speech class at the age of 2 1/2 because he still has a little hole where your gum line should be and tooth missing (never grew in) on top. Both of his surgerys where a hugh sucesses and he still had (has) more too come when he was in Kindgraden he has had surgery to repair is flap in his mouth due to sagging in, during that time he had his nose redone as well because it was sagging from his cleft lip they took a peice of cartlage from behind his ear and used it too form his nose too the right shape. That turned out great as well. He goes too Childrens hospital of Pittsburgh for all of his care. He has one more surgery coming up at the age of nine and then they are going too take a peice of his bone from his hip and replace it into his mouth where is hole is at too close the gap. All in all he has grown up too be a handsome young man and you cant even tell that he has had any kind of plasitic suregery or any think wrong with his features. I have been there with him since day one, so I have been able too watch him grow and see that he doesnt have a visable scar and since it is correctable he would of never new he was born differnt then his sister.

I will include a pic of him now at the age of 8yrs, I will also edit post when I find his baby pic.
Here is a pic of JJ my Nephew Kayla my neice and My two little ones from easter
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  #7  
April 19th, 2007, 01:37 PM
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Wow! He looks wonderful! Such a beautiful smile too!

When you say that he'll have hip bone removed to repair the gap, do you mean for the gum line or will that be for a tooth or?? That's new to me, so I'm interested in what that procedure entails.

I'm so happy to hear success stories! Thanks for that info!
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  #8  
April 19th, 2007, 03:30 PM
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If you look in that photo youll see too the right side of his mouth a gap where the tooth is supposed too be, well it never grew in because there is a gap(hole), in the gum line. Once they remove a peice of his hip bone they will then brace him on his teeth and his other tooth will grow in but it will be a adult tooth. Every plate surgery is different depending on where the plate is open or slit at. His was slit stright back from his gumline where you see in the pic...

Hes a true tropper!!!!
About 8yrs ago when we found out he was going too have a cleft lip we didnt know what it was and so on, we did tons of research and finally found some info, The found that he had this defect thur the sonogram machine, we were all very scared at the time but after his first surgery we trusted the out come much better seeing what he looked like afterwards.
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  #9  
April 19th, 2007, 09:18 PM
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If you look in that photo youll see too the right side of his mouth a gap where the tooth is supposed too be, well it never grew in because there is a gap(hole), in the gum line. Once they remove a peice of his hip bone they will then brace him on his teeth and his other tooth will grow in but it will be a adult tooth. Every plate surgery is different depending on where the plate is open or slit at. His was slit stright back from his gumline where you see in the pic...

Hes a true tropper!!!!
About 8yrs ago when we found out he was going too have a cleft lip we didnt know what it was and so on, we did tons of research and finally found some info, The found that he had this defect thur the sonogram machine, we were all very scared at the time but after his first surgery we trusted the out come much better seeing what he looked like afterwards.[/b]

That's amazing! I think its so awesome the things they can do today.

I'm not sure how many surgeries Beth will have to have. Her palate is completely gone and is in the shape of a very wide U. All of her gum lines and lip were intact at birth and you can't see the palate on sonograms, so it was a big surprise to us. We didn't know what we were facing either once she was born and OMG it was so scary!

Give my best to your nephew! He's so cute! Also, let me know how the surgery goes.
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  #10  
April 20th, 2007, 06:44 AM
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Thank you very mcuh.. I wish you and Beth the best of luck and a sucesseful surgery!!!
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  #11  
April 20th, 2007, 07:43 AM
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Thank you very mcuh.. I wish you and Beth the best of luck and a sucesseful surgery!!![/b]
Thank you!
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  #12  
May 8th, 2007, 03:29 PM
mk513's Avatar Nick's Mommy, Marianne
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I just wanted to provide an update on my friend's baby! She had her surgery on May 1st - the soft cleft palate was closed, the TLA was released, tubes placed in her ears & another hearing test performed. The BEST news of all? She's NOT deaf in either ear!!!!! It turns out that it was just fluid!

Kim, I don't know any other information (I assume that they're busy focusing on taking care of her) but if you have any questions please let me know and I'll be happy to find out answers for you. I don't think my friend has decided to join the board yet, but maybe she will in time.

Hope everything is going well with Beth!
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  #13  
May 8th, 2007, 08:59 PM
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I just wanted to provide an update on my friend's baby! She had her surgery on May 1st - the soft cleft palate was closed, the TLA was released, tubes placed in her ears & another hearing test performed. The BEST news of all? She's NOT deaf in either ear!!!!! It turns out that it was just fluid!

Kim, I don't know any other information (I assume that they're busy focusing on taking care of her) but if you have any questions please let me know and I'll be happy to find out answers for you. I don't think my friend has decided to join the board yet, but maybe she will in time.

Hope everything is going well with Beth![/b]
Oh my gosh, that's AWESOME!! I'm so thrilled for all of you! Your friend must be so incredibly relived and just imagine what a new world it is for them now - especially the baby! Thank you so much for the update.

I have a few questions. Did the baby come home with arm braces to keep her elbows from bending and also, do you know how long she stayed in the hospital after surgery and if she seemed to have been in much pain afterwards? What did they give her for pain? Are there talks if she might need another repair down the road?

Encourage your friend to join. I'd love to have her here!

Beth is doing wonderful, she's just a picky eater. She's 8 months old today, stage 2 foods, seldom if ever gets food in her nose now, getting a bit more coordinated with her sippy cup but still majorly attached to her bottle and she's up to 22 pounds. She's also got 8 teeth! We were concerned in the beginning if she would have her upper fronts because her cleft is so wide. Even though the gums don't look to be affected at all, there was still that possibility. That's not a concern anymore, needless to say.

Thanks for the info and keep me posted!
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  #14  
June 17th, 2007, 08:44 PM
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I have two clefts kids. My intro is somewhere on here.

Zachary had his lip repair at 3 months. He had nasal rhinoplasty and a lip revision at 4 years old. The nasal surgery was to widen the nasal passage b/c he had lots of breathing issues when he would catch colds. He isn't due for anything else unless he decides on a nose job when he is done growing.

Nicholas had his lip repair at 3 months. He had tubes at 6 months as a precaution b/c of the palate. His palate repair was at a year old. T-tubes were put in at 2.5 years old b/c the other tubes came out and he started getting lots of ear infections. The t-tubes will stay put until surgically removed. He goes into the Craniofacial Clinic in July for his yearly appointment. We will be discussing his bone graft surgery. They originally said 7 or 8, but he is having issues with food getting stuck in the fistula so they do it later in the year. He needs to have a palate expander in place for 2-3 months before the bone graft surgery b/c of the mess his permanent teeth are in. He did get all his baby tooth, though one is in his palate (we call it his secret tooth). The palate expander will help get his mouth a bit bigger, so hopefully the adult teeth can straighten out some. He will definately be getting braces at some point though.

Ask any specific questions you would like and I will try to answer them.
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  #15  
June 18th, 2007, 08:16 PM
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I have two clefts kids. My intro is somewhere on here.

Zachary had his lip repair at 3 months. He had nasal rhinoplasty and a lip revision at 4 years old. The nasal surgery was to widen the nasal passage b/c he had lots of breathing issues when he would catch colds. He isn't due for anything else unless he decides on a nose job when he is done growing.

Nicholas had his lip repair at 3 months. He had tubes at 6 months as a precaution b/c of the palate. His palate repair was at a year old. T-tubes were put in at 2.5 years old b/c the other tubes came out and he started getting lots of ear infections. The t-tubes will stay put until surgically removed. He goes into the Craniofacial Clinic in July for his yearly appointment. We will be discussing his bone graft surgery. They originally said 7 or 8, but he is having issues with food getting stuck in the fistula so they do it later in the year. He needs to have a palate expander in place for 2-3 months before the bone graft surgery b/c of the mess his permanent teeth are in. He did get all his baby tooth, though one is in his palate (we call it his secret tooth). The palate expander will help get his mouth a bit bigger, so hopefully the adult teeth can straighten out some. He will definately be getting braces at some point though.

Ask any specific questions you would like and I will try to answer them.[/b]
Did they mention how common the fistulas are and does it cause him a lot of discomfort? Beth's cleft palate is very very wide and I'm worried about multiple surgeries. Does he have to have the additional surgery because of the dental problems and has the palate repair held well? I'm a nervous wreck. Beth's surgery is coming up in September. How many hours was he in surgery and how did you cope while he was in there?

Thanks!!
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  #16  
June 18th, 2007, 08:53 PM
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Did they mention how common the fistulas are and does it cause him a lot of discomfort? Beth's cleft palate is very very wide and I'm worried about multiple surgeries. Does he have to have the additional surgery because of the dental problems and has the palate repair held well? I'm a nervous wreck. Beth's surgery is coming up in September. How many hours was he in surgery and how did you cope while he was in there?

Thanks!![/b]
I really am not sure how common fistulas are, but his doesn't bother him at all. He complains if food gets in there and will come asking me to remove it with tweezers. It is right along the gumline at the very tip of the palate repair. His is a more recent development (the last nine months or so) and I think it is b/c his mouth is growing. The fistula is right by his secret tooth, so I think that plays a factor in it as well.

The palate repair has done really well. The only thing we have had was the fistula and I think if the tooth wasn't there, then the fistula wouldn't have been there. We don't have any dental surgeries on the horizon, but I haven't done a lot with the dental stuff yet. We have been going to the orthodontist by our house since he was about four just to get him used to the doctor and all that fun stuff. My oldest two have braces, so he is used to the office anyway.

The next step for him is the palate expander and I am a bit worried about it. I joked with the orthodontist that we spent a lot of time and money closing the palate....not so sure I want to play around expanding it. He told me all would be fine unless there was an existing hole in the palate we can't see. I guess time will tell. He also got his first set of dental xrays at the last visit earlier this month and his permanent teeth are a mess. One each side of the top he has teeth stacked on top of each other. One of the assistants said his are the worst she has seen in 30+ years in the field. They are hoping the palate expansion will help the teeth shift into better positions. Again, it's a wait and see thing.

I honestly can't remember how long his surgery lasted. I will have to check with my husband. The hardest part for us was after he got out of surgery. He is a bleeder, which we didn't know until after the palate repair. I was not expecting the amount of bleeding that he had and that really threw me for a loop. He didn't want anything to do with cups/bottles for a good 24 hours after the repair. We stayed an extra day b/c he had so many issues with the bleeding in the beginning. The recovery after we got home was fairly smooth. The biggest thing was getting him to take anything by mouth and we ended up letting him have his bottle back after 24 hours b/c he wasn't doing anything with cups, syringes, or anything else we tried. I made sure to have plenty of friends/family on hand during the surgery to help pass the time.
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  #17  
June 18th, 2007, 09:25 PM
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We're hoping she doesn't have any dental issues, but it won't surprise me. We were told all bets are off, so we're playing the wait and see game too. She's already cut the first 8 and they seem to be alright, but then we're just talking baby teeth too. They said she could have issues even though she doesn't have the CL and the CP doesn't extend into the gumline, however, it's right behind it all the way around.

Did the palate team tell you anything about the bottles before the surgery? We were told to have Beth weaned by 10 months because of the sucking and new palate issue. Did they mention anything about after the palate is healed? Also, did they send him home with anything to keep his arms from bending so that he couldn't put anything in his mouth? I've heard such horrible stories about those splints. I hate to think of her in those things, but then I hate the thought of her damaging her palate even more. I've heard from some parents that didn't get the splints and some that did. Just curious how common that practice is.
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  #18  
June 19th, 2007, 04:40 AM
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Quote:
We're hoping she doesn't have any dental issues, but it won't surprise me. We were told all bets are off, so we're playing the wait and see game too. She's already cut the first 8 and they seem to be alright, but then we're just talking baby teeth too. They said she could have issues even though she doesn't have the CL and the CP doesn't extend into the gumline, however, it's right behind it all the way around.

Did the palate team tell you anything about the bottles before the surgery? We were told to have Beth weaned by 10 months because of the sucking and new palate issue. Did they mention anything about after the palate is healed? Also, did they send him home with anything to keep his arms from bending so that he couldn't put anything in his mouth? I've heard such horrible stories about those splints. I hate to think of her in those things, but then I hate the thought of her damaging her palate even more. I've heard from some parents that didn't get the splints and some that did. Just curious how common that practice is.[/b]
Our surgeon recommended he be weaned before the surgery, but it didn't happen for us. He wanted nothing to do with weaning from the bottle. Nicholas wouldn't take a cup. We tried all different things after the repair and he refused every one of them. He ended up back with his bottle about 24 hours after the surgery. Most parents I talk with have surgeons who refused to let them use a bottle for up to six weeks. I think it is a surgeon to surgeon thing. We never had any issues with it, but that doesn't mean anything for other people. We used the Mead Johnson nursers with a little bigger hole cut in the nipple.

They send the kids home with something called welcome home sleeves (at least that's is the name here). They are basically fabric that ties all the way around the arms and go from the wrist to the armpit. They have a series of what look like popsicle sticks through them to keep the kids from being able to move their arms. I would be aware though kids are notorious for being able to get out of them, so I would still keep a close eye on Beth. Even at three months, my boys were able to wiggle out of them. I can't remember how long we used them after the surgery, but I want to say it was at least two weeks. My kids didn't really mind the welcome home sleeves and didn't seem too frustrated with them, but my older cleft kid was only three months old when he wore his. Nicholas had older siblings to entertain him if I was busy, so I think that probably helped.

We have our yearly appointment with the craniofacial team the first week of July, so I will have more information about the up-coming surgery for Nicholas. I am almost hoping they do it this year b/c he starts school in the fall and I would like to have it done before he starts if we can. I am not sure that will happen though b/c of the palate expander needing to be in place.
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  #19  
June 20th, 2007, 07:46 PM
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I'm not too keen on the sleeves, but I know it's probably a must. Beth is supposed to be weaned in the next few weeks, but she's so attached to her bottle that I don't see it happening. She can and does take her sippy cup but it just doesn't compare as far she's concerned.

Let me know about the appointment!!
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  #20  
August 20th, 2007, 09:11 PM
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Sorry.....took me forever to make it back here. Things have been slightly hectic in my neck of the woods.

The appt with the team went off without a hitch. The boys are doing great. My older cleft kid (Zachary) is done with surgeries unless he elects to have cosmetic stuff done later in his teens. My youngest son (Nicholas) is off the hook for a few more years it seems. They are waiting until he some baby teeth start coming out before they do any other surgery with him. He is up for the bone graft next, but before that he will get his palate expander set.

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