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I had a baby girl on Nov 2nd and she was born with a cleft pallet. I was wondering if anyone had information or stories to tell about this topic. ↓
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| Name: mommyinwaiting | Date: Nov 30th, 2006 1:20 PM |
| hi, our son has a soft cleft palate. It was repaired when he was 11 months old. His mouth is now desesitze (I know that is not spelled right) so we are going thru eating therapy. They do wonders now adays for cleft repair :) The hardest part for us was eating issues. ↑ |
| Name: singlemom2 | Date: Nov 30th, 2006 7:44 PM |
I have a son who is 12 years old who was born with a cleft palate and lip. It was a ride!!
We had a wonderful doctor with a new proceedure that was simply amazing! My son had his closed within the first year (he also had other birth defects) and this proceedure involved an appliance that basically steered the palate in the direction they wanted it to go as my son was growing. That dramatically cut down on the surgeries because they didn't have to go in and keep re-aligning it where it needed to be. It really worked! He has had one surgery to close his lip and one to close the palate. We are now looking at orthodontics to straightened his teeth. He will probably have one more surgery for cosmetic reasons on the tip of his nose, but that will be all. He looks great!
Feeding was always an issue but not just because of the cleft. He also has dysphasia (swallowing incoordination) and had severe reflux, which he needed surgery for too. He was a silent aspirator. He is eating EVERYTHING he wants to now and has been for many years! ↑ |
| Name: Help. | Date: Dec 1st, 2006 7:54 PM |
My sister was born with a cleft lip and pallet. She is beautiful!!! It's very hard to tell she had one. She was popular in school and very out going. There were many obsticles along the way but she's 23 now and a very happy person. Good luck to you and your beautiful daughter.
P.S. Nikki (my sister) doesn't speek with any kind of impediment. She had speech therapy as a child and it helped her a lot. ↑ |
| Name: Ange22 | Date: Dec 19th, 2006 6:30 PM |
Hello,
I was born with a Cleft Palate it was repaired and you would never be able to tell by looking at me. The only things related medical problems I have had are with my sinus's and trying to correct my teeth. I have had braces but due to the scar tissue it was a couple years any they had moved back to where they were. ↑ |
| Name: ALYSSASMOM | Date: Jan 2nd, 2007 9:24 AM |
hi,
I have a 16 month old little girl named Alyssa. She was born with a cleft of the hard and soft pallett. She had her surgery when she was 13 months old and is doing wonderfully now. Last month she started drinking from a regular sippy cup(one with a regulator) and from a straw. Fedding at first is a deffinate issue. Alyssa went to St. louis childrens hospital. Her dr. Dr. alex Kane is absolutly amazing. they gave her a new nipple that had just made it's way into the U.S. It's called the pigeon nipple.. WONDERFUL!! I've seen the haberman and some of teh other methods of feeding cleft baby's but this nipple is great. What method are you using?
I think the hardest thing for me was not knowing what to expect. I had never know anyone or been around anyone with a cleft pallett. Alyssa has no other problems. Her teeth are beautiful and straight... She's great... mail me back, I ould love to hear how your little one is doing... ↑ |
| Name: niki harrison | Date: Jul 3rd, 2007 9:01 AM |
| i had a girl on 3/3/05 she had a clept pallete but i did no till the nurse come round and checked her. so we waited for the clept nurse i thort it was verry hard and my family said it was hard aswell ↑ |
| Name: sellis | Date: Jul 5th, 2007 11:57 PM |
| My 4 year old son was born with a cleft palate. He had a very large cleft due to Pierre Robin Sequence. We were very fortunate in that the only real problems that we had were with eating. He was on an apnea monitor for 8 months as a precaution, because he has such a small airway. His palate was repaired when he was 9 months old. He has been doing great. He has a good deal of hyper nasality (a term you will become very familiar with) and is still in speech therapy for that reason. I would be happy to answer any questions you may have. I know it is so frustrating, but hang in there. It does get better. ↑ |
| Name: Amy Lathem | Date: Jul 18th, 2007 5:33 PM |
| My son has a submucious cleft palate. The only major thing he has went through is having tubes 3 different times. He is now three years old. The only other thing we have had problems with is his speech. This is due to the cleft palate, but also having so many ear infections where he could not hear. We are starting speech thearpy this fall with the local school system. He is also seeing the Childrens Healthcare of Atlanta Center for Craniofacial Disorders. This was mainly to see if he needed surgery or not. In fact I went today and the doctor is not recommending surgery. I hope this helps. ↑ |
| Name: Laura | Date: Aug 13th, 2007 12:50 PM |
| How long does the surgery take to repair the pallet ↑ |
| Name: amber | Date: Aug 21st, 2007 9:28 AM |
| my little sister has one and they can be fix or closed up as you would say but every couple of years that have to reclose it as her mouth grows they also have to be kept very clean but she will be fine ↑ |
| Name: Eddie | Date: Aug 23rd, 2007 1:14 AM |
| Hello. My son was born with a bilatteral cleft lip and cleft pallate. It was very devastating at first since it was an unknown issue. Feeding was a big issue at first because of the condition. In fact, he had to stay in the ICU for a while because of it. Our doctors recommended the pigeon nipple and it was great. It seemed to provide exactly what he needed. The orthodonist on our cleft lip and pallate team used an appliance similar to a retainer to steer his gums and nose in the right direction. He had his first surgery when he was 5 months old to repair he lip and nose. The surgery was very tough for us but he came out looking great! He looked like a different baby! The surgery seemed to make feeding much easier for him. It really is amazing to see how fast babies can heal. It didn't take him long to be in the top percentile in weight and height. He's a big boy which usually isn't normal for babies with this condition. Yesterday, he had his second surgery to close his pallate. I was really scared that my boy would loose his sense of humor and fun nature. The surgery went really well. The first 8 hours or so were pretty hard because it was obvious he was uncomfortable. You could tell he wanted to smile when I pulled out his favorite toy but it just hurt too much. He finally fell asleep late and got some rest. Once he woke up this morning he was already back to his old self. He woke up smiling and was ready to drink milk. We have to use a small squeeze bottle with a small and soft tube since the pallet is very delicate. He is doing very well with it. We were able to come home today since he was doing so well. He is hating the arm restraints that he has to wear to keep his hands out of his mouth, but otherwise he is doing wonderful. I normally don't do stuff like this but I just had to take the time to share this with anyone who is going through the same issue. I remember telling myself and my wife, "How the heck are we going to get through this?" Well, we did by the grace of God. Sometimes it was very hard and frustrating with all of the appointments and long nights. My wife and I learned to be patient and have faith in our God. He is faithful and renews your strength if you seek him in your time of need. What an amazing God! ↑ |
| Name: nirdosh | Date: Aug 29th, 2007 9:46 AM |
| i have a 2 months old niece she is suffering from cleft pallet in her neck its not too much but it creates problem in feeding the baby sir please tell me how to feed the baby and take care of her ↑ |
| Name: lorraine | Date: Sep 6th, 2007 3:07 PM |
| my daughter was born with a cleft pallet the soft pallet and not the air lip she had three operations to correct this ↑ |
| Name: Mike | Date: Sep 7th, 2007 6:16 PM |
| To Laura, my son just had his Pallet repair done this week (~48 hours ago), and he is already back home! The Surgery itself was about two hours and fifteen minutes. Amazing. ↑ |
| Name: Shelly | Date: Sep 11th, 2007 9:33 AM |
| This is for all the parents with newborn cleft babies. My son was born with a unilateral cleft, and the hard and soft palate gone. YOu could turn him upside down and see inside his nasal cavity. I was 19 when I had him. My husband and I had never heard of this condition moreorless dealt with it. He had his first surgery at 3 months old. It repaired his lip. His second surgery at 1year. This was the palate. He continued to have surgeries about every 6-12 months to repair his condition as he grew. Eating was always a huge issue. Breastfeeding was completely out of the question. I literally fed him sitting up. There was none of this laying him in bed with a bottle. We were lucky in a few ways though. My son has only had one ear infection his whole life. His teeth have all come in but he will have to have braces next year. He is very bright, energetic and is just your average 15 year old. All in all, I believe that he has had 8 or 9 surgeries. His palate has been completed and as long as there is not a hole present he is good to go. Outside, we have left his lip options open to him. As he goes through puberty he may want to do some cosmetic work, but we have left it up to him. Any way, parents--BE PATIENT, HAVE A LOT OF LOVE AND ENORMUS FAITH. The LORD chose certain parents for these special babies. He doesn't give you anything that you can't handle. ↑ |
| Name: Tanya | Date: Sep 22nd, 2007 3:00 PM |
| Yes I was born with a cleft palate and since has been repaired ↑ |
| Name: Tanya | Date: Sep 22nd, 2007 3:04 PM |
| mine ws called i do believe if memory serve me correct pierre robin syndrome my parents said that i ws lucky i didnt have any other issues due to the severity of the cleft it was soft and hard palete last repair was when i was 17 closed the hole complety ↑ |
| Name: Lillys Mommy | Date: Sep 23rd, 2007 10:06 PM |
| My daughter has a Cleft Pallet... SHe is actually having surgery done in october and what they do is take both sides and bring them together.... The muscle did not grow like our's (whom do not have this), So they bring it back together... My daughter will have to stay in the Hospital over night so that they can monitor how she is doing... They had also let me know right after she was born, that they do not do this procedure intell they are nine months old because they want to make sure that they can handle the anistesia (i do believe that is how you spell it). ↑ |
| Name: De-Rose Spencer | Date: Sep 26th, 2007 6:15 AM |
| hi. i am derose spencer from PagoPago, American Samoa. i was born with a clft pallet and had a surgery at the age of 8. when i didn't have this surgery, people just don't understand what i am saying, and it made me think that i had the horrible voice of all...but after my surgery, i feel like 50 percent of my burden has been taken off....so yeah..this is my story of how my life has change with just a surgery...god bless you all..... ↑ |
| Name: Bradleysmom | Date: Sep 26th, 2007 4:59 PM |
| My son was born on 7/10/07. He has cleft palate it was a shock to us. He goes into surgery in oct. Im scared and dont know what to think. ↑ |
| Name: ace | Date: Sep 27th, 2007 6:01 PM |
| hey, i am a 17 year old girl and i have a cleft lip and cleft pallate. i have one more operation i think i am going to get; plastic surgery. just to make my face more symmetrical, although it's not too terribly bad. has anyone had that, and does it hurt alot? ↑ |
| Name: ARVINDER | Date: Sep 28th, 2007 7:24 AM |
Hi !!!!
I saw this mail on Sept 2007 ,this was probably written 1o months back .I too have a baby with Cleft Pallet .Can you please let me know how is your baby doing .Has he been operated and how is he feeling now .I need to know if you know any feeding gadget ,by which he can take milk without choking or getting ear infection .
Bedi ↑ |
| Name: Kim | Date: Oct 5th, 2007 10:03 AM |
| my brother has a cleft palate... he is now nineteen and im 16.. he has went through very many surgeries.. i remember as a little kid him always being in the hospital.. he also has add and adhd and he has poor teeth so between his cleft palate, Attention Deficit Disorder and his braces it has been hard for my family.. but we still treat him the same as anyone else! i love him soooo much! he is probably the best big brother any girl could ask for! ↑ |
| Name: kathy connors | Date: Oct 10th, 2007 1:37 PM |
| my brother was born with cleft pallet hes 9 now ↑ |
| Name: kathy connors | Date: Oct 10th, 2007 1:49 PM |
| can anybody tell me what age these people were when they started talking please my brothers 9 and still dosent speak ↑ |
| Name: julie | Date: Oct 13th, 2007 9:43 PM |
| my son ad a cleft pallet with out the air lip ! my sister ad no roof 2 her mouth ,she was lucky but if u ask her she wasnt ! ive ad 2 boys my oldest boy ad a cleft pallet `. ↑ |
| Name: sophieleigh18 | Date: Oct 14th, 2007 3:47 AM |
| I was born with a cleft pallet and hare lip. Im 18 now and about to have maybe one of my last surgeries. Im so excited! lol. Ill tell you now, school was hard, having to tell all my friends why my face looked the way it did. But after a while I looked at it a different way. They say that this happens to one baby in about 700, I was that one in 700! cool. I think that my mum, being a single mum, did the best job in the whole world. It wasnt easy, having to take time off work to take me to Sydney and to help me after surgeries etc. I know that my child (when i decide to try for one) will have almost a 75% chance of having the same problems. It was tough growing up with this problem being so noticable, but im so happy, I have a job, friends and a boyfriend of 4 yrs. Im normal in every other way. I just cant wait to have my surgeries and look even better. To all the parents out there that have a child with cleft or hare lip, good luck with everything, with the amazing things that can be done today you'll never know. ↑ |
| Name: Charlene | Date: Oct 21st, 2007 9:58 PM |
| I have a friend who just had a little girl...Ava with a cleft pallet, and it was not diagnosed before delivery..and she is severly depressed..I have three children but have not had to deal with such issues..I feel terrible for her..but tell me if I am wrong, this is fixabe..right???? not to say it is not devistating..but it is fixable..and if it is done by the time she is a year.and I am asking would it affect her speech..or any other areas...I know it must be terrible...but it could be worse..am I terrible?? I don't know what else to do..........help!!!!!!!!!!!!!!!!!!!!! ↑ |
| Name: Silas' Dad | Date: Oct 24th, 2007 4:32 PM |
| My son was born on October 17th with a Cleft of his soft palate. He is going to the facial center of Scottish rite in Atlanta this Friday the 26th for further evaluation. We are using a Haberman (sp) bottle and he appears to be doing great. Anyone else have just a cleft of the soft palate that can tell me what to expecty? Our pediatrician seems to believe his cleft is very minor and we should only have 1 surgery and possible speech therapy, it sounds a little to easy so I need some help with this....If you have any related stories or situations like mine , please let me know... Thanks ↑ |
| Name: ashley | Date: Oct 31st, 2007 12:23 PM |
| my brother in law has a cleft pallet ↑ |
| Name: proudmommy | Date: Oct 31st, 2007 1:59 PM |
Sila's Dad,
I have a daughter who turned 2 in July. Her situation sounds similiar to your son's. Hailey was born with a cleft of her soft pallet. We were not able to breast feed due to the cleft pallet and had to use the pigeon bottle. The bottle allowed her to eat, but also caused tummy troubles due to air intake. Feeding got a lot easier at about 6 months when she was able to sit up and eat baby food. She had tubes put in her ears at 5 months. She didn't have ear infections, but needed the tubes due to fluid building up behind her ears which caused muffeled hearing. She had her cleft pallet repair surgry at 14 months (sept. of '06). The surgery took about 3 hours. Recovery is very difficult to watch your child go through. We saw a speech therapist at 16 months and Hailey passed the evaluation. Now a year and one month since her surgery, Hailey is a beautiful, inteligent, healthy two year old. Her speech is doing great. We are going to get another evaluation by a speech therapist soon, as I have been told that if a speech problem does exist the earlier you treat it the better. We are fairly sure that she does not have to have any more surgeries. Going through something like this definately makes you and your child stronger. What a difference a year makes! Hope everything goes well for you and your son. ↑ |
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