Cleft palate repair

Dorreen - posted on 01/20/2009 ( 31 moms have responded )

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what age was you child when he/she got their palate repaired

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Sarah - posted on 10/20/2011

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I should update this. My daughter had Pierre Robin. Her cleft palate repair took place a year and a half ago when she was one. She started to make new sounds as soon as the pain meds started wearing off. Her speech developed like crazy, but she was on the stomach tube for another year or so. She just got off the tube in April. We are so grateful that she eats (I never used teh drip system and always offered food), but she does not want to eat much. She will try anything and loves spicy/flavorful food, but to get her to eat anything more than three bites is tricky. We give her lots of pediasure and play games with our food and make it fun. Hopefully, it will get better as she gets older. Anyway, overall the cleft issues are gone. She may need her jaw fixed later, but it is not urgent. And she is off teh g-tube!

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Rebecca - posted on 06/19/2013

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my son is 10 months old and he has a cleft palate he is on the pigeon bottle because he has no suction. he will not even try to repeat any sounds except for mama.its not really that he cant make the sounds he just wont even try.his surgery is in 1 month and i was just wondering how soon after the repair will he be able to make different sounds or try to suck?

Rebecca - posted on 06/19/2013

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my son is 10 months old and has a cleft palate.and he will be going in for the repair in one month.i have been searching to find someone who is a parent to fill me in on what to expect after the surgery.im so scared i think he will probably be in a lot of pain and they say that he will have to have arm restraints to keep him from putting his finger in his mouth that is probably going to be horrible for a 11 month old baby.my surgeon says that he can go back to the pigeon bottle immediately after the surgery.what is your opinion on the bottles cause i know some say no bottles.another thought is that his cleft is soft palate and partially hard palate so when they just fuse it together in the middle with soft tissue you would think that the partial hard palate needs to be hard again for good speech results so i guess what im saying is...is it ok for there hard palate to be soft to?

Ahlam - posted on 02/25/2013

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Best way to help put a baby to sleep without the bottle? My son is going into surgery for cleft palate repair and he is used to the bottle. He takes his bottle on his own and falls asleep in the swing. Now with the surgery he can't have the bottle. What should I do?? What has worked for other moms out there!

VanessaR - posted on 09/06/2010

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My daughter was also born with Pierre robin sequence and has a g-tube. She is such an alert baby and makes AH- sounds and coos a lots. Before she has her palate surgery they might have to do a mandibular distraction cause her jaw is very small.

Michelle - posted on 08/02/2010

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My son Jacob was born with Pierre Robin Syndrome and he had a jaw distraction surgery when he was 5 weeks old. He is now 1 and just had his cleft palate repair done about a month ago. Everything is fine now, his palate is fixed now and he is doing great.

Anita - posted on 02/02/2010

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Hi there, my little boy was almost 13months when he had his repair. He also had Pierre Robin Syndrome. In hospital for 3weeks with a feeding tube but was discharged without one which was awesome. Weighed a healthy 8lb 3 when born but for the first 3 months struggled to put weight on. Changed bottles from the haberman to the Chuchu which was awesome so much easier to use!!! He is now just gone 2 and strapping 17kg and chatting along nicely. Although there are some sounds he struggles with. I am surprised by the amount of trachs listed here are you all American???? My son was born in New Zealand and they dont tend to do them here, sleep on tummies!!! Your son looks like an absolute cutie, i wish you well with surgery, it does get easier!! Kind regards Anita

Maria - posted on 01/24/2010

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Kaitlyn was born with Pierre Robin. She will have her first cleft palate clinic this week. We were told that Palate surgery would be around 9-12 months. She will be 9 months in 2 days. She is missing her soft palate and just a little of her hard. We are hoping that everything can be done in 1 surgery.

Leah - posted on 09/02/2009

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My son was born in May of 2007 with PRS and Stickles Syndrome. He was in the hospital for 74 days. While there w opted to have a Tongue-Lip Adhesion done instead of the Trach. Best decision ever. He came home with no equipment other than an apnea monitor. No feeding tubes. He had his first palate repair at 13 months and a second small repair at 19 months. He is doing awesome now. We go back to the Dr. in Dec to see about another set of tubes and possibly lowering his pallate to help with speech.

Kristina - posted on 08/26/2009

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My daughter had to have a g-tube put in..she is now 9 months old..we have not had to use it for months because she is able to suck on the bottle and now she eats
It was nerve wracking in the beginning but in a few days that we were home..it was easy..It does get red..and it does leak which is normal..they will show you everything..granulation may appear around it sometimes not all..my surgeon told me to use Maalox on it and I did ..that is something you need to ask about..I had went to the surgeon a couple of times just because I didn't know..it took it away..even though we don't use it now it still happens. it never seems to bother her..she is now going to have her palate repair surgery in less than a month and hopefully she is able to drink from her bottle and we can get it taken out

Katy - posted on 08/26/2009

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My son was born just 3 weeks ago on the 2nd and he is still in the hospital. He had his first surgery last week to get a trach put in because of PRS. I'm hoping isn't not going to need a G tube but I have this funny feeling that he'll have to have one. :( With a trach and possible G tube....I'm a little nervous for the moment we finally get to bring him home.

Patty - posted on 07/15/2009

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Quoting Sarah:



Hi!  My daughter was born two months ago with a cleft palate and Pierre Robin.  They say they are not going to do any cleft palate surgery until she is a year old.  She breathes ok (especially on her side or with a binky), but she is being scheduled for a feeding tube b/c she just does take in enough.  Other than the growing (she has only grown a lb in two months), she seems on track developmentally.  Did anyone else get a feeding tube?





Sarah, my daughter is 5 months old and was born with Pierre Robin. She does not have trouble breathing either, but was in the hospital at 3 wks age with bronchiolitis. She had a G-tube for feeding while there and for a couple weeks after coming home. It was pretty easy to use and not invasive at all. She has since been on the habermann nipple and doing all feedings orally. I have found that as she has grown, her feedings have gotten much stronger, so hopefully your daughter will not need it for long.



 

Dorreen - posted on 07/11/2009

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we just got the date for Colbys cleft fixed the soft will be done on sept 14. the hard will be done later down the road. Colby is 1 now and doing good.

[deleted account]

My daughter is going to be 8 months. She was born with Pierre Robin. Her tongue was falling back in her airway, even though she was partial tongue tide. We took her to Childrens Hospital in St. Louis to there team of doctors there. (it is one of the best hospitals). Our daughter at three months had surgery to move her jaw forward. Her jaw was set back and the doctors felt like it would never catch up with her face. We opted for this surgury due to the fact the a trac.\ feeding tube was only going to correct the surface problem which was her eating and breathing AND she would still have to get her jaw moved forward eventually anyway. After her surgery her breathing is perfect! She drinks from a bottle (Dr, Brown with the pigeon valve) as normal as could be NO CHOKING... She has a few scared but the doctors are going to repair them when she gets her pallet fixed. The usually wait a until the child is a year due to the fact the roof of the mouth can stop or slow down growth.

Kristina - posted on 06/19/2009

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I found out that Emma will be having her surgery on Sept 21st...she will be 10 months

Kristina - posted on 05/28/2009

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Hi my daughter emma is now 6 months old and has Pierre Robin Syndrome..She does have a g tube..but luckily she was able to learn how to suck a couple of months after she came home from the hospital so now she is only bottle fed with a haberman nipple..we went to the plastic surgeon yesterday and they are wanting to do her palate repair in sept/oct..the tube is still in and it will come out after her repair..it will be easier till she can eat and drink after

Ashley - posted on 03/08/2009

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no feeding tubes here and no problems breathing.. sorry to hear that. My thoughts and prayers are with you and ur baby. My son had his first surgery when he was 6months old. He did have a very hard time gaining weight tho.

Sarah - posted on 03/08/2009

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Hi!  My daughter was born two months ago with a cleft palate and Pierre Robin.  They say they are not going to do any cleft palate surgery until she is a year old.  She breathes ok (especially on her side or with a binky), but she is being scheduled for a feeding tube b/c she just does take in enough.  Other than the growing (she has only grown a lb in two months), she seems on track developmentally.  Did anyone else get a feeding tube?

Ashley - posted on 01/29/2009

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Well Elijah is still behind a lil bit but he has lots of ppl working with him like Physicla therapists occ therapists, all diff ppl- He even has a massage therapist- I learned from her that giving ur baby infant massages will help with growth and everything you could imagine... You should check into that. I got certified in it and it helped him tremendously. You dont even hafta go to school to be certified..

Dorreen - posted on 01/29/2009

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he is a great baby. he is doing so much more then they thought he would. he is still behind but is close to his adjusted age. he is & months and is adjusted to 5 months 1 week

Ashley - posted on 01/29/2009

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Aww well I'll keep him in my thoughts an prayers I know how hard it is and when u feel talkin to someone u can talk to me. Just remember be thankful for what you do have and it could always be worse...

Dorreen - posted on 01/29/2009

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We went to the Dr the other day and they said to come back in 3 months and they will start thinking about doing the repair. since he has a trach they are not in a hurry todo it.

Ashley - posted on 01/29/2009

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My child had the 1st surgery at 6mos. The 2nd at 9 mos. He was also born with Pierre Robin but it nvr affected his breathing. His surgeries went incredibly well. I wish you luck with your son...

Dorreen - posted on 01/20/2009

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my son has Pierre robin also whas your son trached? Colby also has charge syndrome

Jackie - posted on 01/20/2009

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He was 13 month for the first repair - this was delayed because he had pierre robin syndrome too which effected his breathing.  He is now 51/2 and has just had a week in hospital to have the muscles realigned and the palate stretched to help with his speech.

Dorreen - posted on 01/20/2009

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Colby will be 7 months on friday he is waiting to have his done no date yet. he was born with pierre robin syndrome

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