Name: wawa_5 Title: Cleft Pallet

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: 11/30/2006 13:20:56

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: 11/30/2006 19:44:38

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: 12/01/2006 19:54:04

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: 12/19/2006 18:30:56

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: 01/02/2007 09:24:44

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: 07/03/2007 09:01:11

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: 07/05/2007 23:57:54

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: 07/18/2007 17:33:34

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: 08/13/2007 12:50:49

How long does the surgery take to repair the pallet  =

Name: amber • Date: 08/21/2007 09:28:30

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: 08/23/2007 01:14:54

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: 08/29/2007 09:46:18

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: 09/06/2007 15:07:46

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: 09/07/2007 18:16:28

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: 09/11/2007 09:33:26

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: 09/22/2007 15:00:47

Yes I was born with a cleft palate and since has been repaired  =

Name: Tanya • Date: 09/22/2007 15:04:23

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: 09/23/2007 22:06:31

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: 09/26/2007 06:15:27

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: 09/26/2007 16:59:58

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: 09/27/2007 18:01:08

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: 09/28/2007 07:24:26

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: 10/05/2007 10:03:32

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: 10/10/2007 13:37:15

my brother was born with cleft pallet hes 9 now  =

Name: kathy connors • Date: 10/10/2007 13:49:44

can anybody tell me what age these people were when they started talking please my brothers 9 and still dosent speak  =

Name: julie • Date: 10/13/2007 21:43:58

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: 10/14/2007 03:47:38

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: 10/21/2007 21:58:58

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: 10/24/2007 16:32:09

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: 10/31/2007 12:23:31

my brother in law has a cleft pallet  =

Name: proudmommy • Date: 10/31/2007 13:59:56

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.  =

Name: Lary in Laffy • Date: 11/02/2007 05:18:02

It's late and couldn't sleep so I decided to look up my birth defect. I don't know if anyone will read this but it is way over due that I express some feelings. Yes, I was born with a cleft lip and palate. I have been blessed with great doctors, good insurance in my older years, Crippled Children's and March of Dimes when I was younger.I understand surgical techniques have imporved greatly since I was born but I still see some young kids suffering with very poor plastic surgeries. It breaks my heart because I know the pain they are going through. Over all I have had 20 surgeries, braces 3 times, my jaws wired shut, skin & bone grafts just to try to look "normal." The work done on me has been very good. Now when dentists or doctors examine me they assume I was in a car accident that left the left side of my face slightly mishapen. They are surprise to find I was born with cleft lip & palate. My last surgery was almost 10 years ago at the age of 40. I had to under go a face & brow lift. The muscles on the left side of my face started drooping badly. It gave me a huge boost to my self esteem. Which is why I'm righting this. I want parents of children with facial deformities to understand the emotional pain that comes with this birth defect. Society doesn't accept things that are different very well. They are specially hard on facial deformities. I once had a mother tell me she would rather have her child born without arms then have a mark on his face. Growing up I never once had anyone tell me how cute or handsome I was. I remember when I was 5 (and yes I remember that far back very well) an aunt saw the other kids wouldn't play with me and she bent down and told me how beautiful I was on the inside because I had a kind and loving heart. I love her to this day for those word and I try live by them no matter how cruel people get. Parents you can't fight your kids battles for them but you can give them a safe place to come home to every day. And it is every day someone says something. Someone thinks you are "gross." Refuses to shake your hand or make eye contact when being introduce to you. Family members are just as bad. The visits to Grandma's house were great. The brother and sisters getting warm hugs and kisses on the mouth while I got my hair tossled and a "How ya doin?" Parents would send me next door to play if someone important like a boss was stopping by for a visit. "You understand son. We don't want someone staring at you do you?" I made he decission at 9 years old to never have children of my own. I would never take the chance of passing my birth defect on to an innocent child. Don't get me wrong. For the most part I am a happy go lucky individual making my way in life. But the scars I have on my body from all the surgeries are few compared to the emotional scaring that has taken place growing up "different." I'm not looking for pitty or even a shoulder to cry on. I know there are people out there who have it a lot worse that I ever have. I'm very thankful for those that do look past the defects to see my kind and loving heart. So parents, I know it's hard on you having to watch your children go through surgeries and you say God gives you the strengh. I hope God also gives you the understanding to love a child that is different and to know they need a little extra understanding sometimes. Don't fight their battles for them but give them a soft place to land, cry, and regroup for the next day. Thx listening..Lar  =

Name: Lary n Laffy • Date: 11/02/2007 05:29:23

Oh sorry for the typos...guess I should proof read before hitting submit...and "righting" when I meant writing....yeah...it's late..but thx again for spending the time...Lar  =

Name: momaloyd • Date: 11/14/2007 08:35:41

I had a baby girl in 1999 that was born with a cleft soft palate. she had it repaired and ever since then we have been dealing with hearing and ear infection problems. we finaly got the problem figured out. her palate is too short. she is 8 years old and has to go through another painful surgury. I am scared for her. I remeber her first one and dont want her to have to gothrough this again  =

Name: Paul • Date: 11/16/2007 00:44:58

I too had a daughter born with a cleft pallet. My wife and I found out she had a cleft pallet about 60 seconds after she was born. We went from joy to shock. I did not know what to expect. After meeting with a team of doctors, I felt some relief. In the first 2 weeks she was born, we had more doctor visits than a new parent coul imagine. The doctors told us her surgery would be corrected after she turned one. Since her surgery she has done very well. She looks, eats and talks like any other child. She is now 5!  =

Name: adam • Date: 11/16/2007 18:27:36

hi my names adam im 16 yrs old and i have cleft pallet ive been treated under mr sommerlad cleft clinic and he is such a good dr im set to have a operation on the cleft in a matter of weeks now to titen the muscles up in the pallet because the whol in the pallet kepps reappering im rele worried of whether this may effect my speech as i have got use to this speech as it is could sum 1 email me at a.page@mail.com to answer wether this may effect my speech thanks adam  =

Name: adam • Date: 11/17/2007 00:18:15

hi im 16 yrs old i wrote something below but arfter reading the comments of every 1 what momaloyd has said about her daughter i suffor with the same thing constane ear infections but only its like pass the passel with me they dont wanna know what is up with my ears do you know what my infections could be to do with thanks  =

Name: momaloyd • Date: 11/17/2007 16:09:21

they have found out that my daughters ear infections were due to the istation tube not being able to close so there for all the germs from her mouth were just getting backed up into there and causeing most of the infections. the found out that her pallet is to short so now she is going to have a pallet extintion surgury soon.  =

Name: LarsnLaf • Date: 11/18/2007 02:26:26

Adam...I'm not sure your e-mail address is complete so I am posting mine. Feel free to contact me. Anyone else that has questions or just want to talk about cleft lips & palates. LarsnLaf@aol.com  =

Name: Kiara • Date: 12/09/2007 13:01:42

I have a clef pallet , but doctors dont know how it happens  =

Name: Jesus • Date: 12/09/2007 18:17:02

I just want you to let you know that I was born with a Cleft Palate, And I HATE LIFE im 17 and wish they would have just killed me when I was born that way Everything could be done. Life is really hard I can't talk right, My face is so ugly, im preety much worthless  =

Name: Felisha • Date: 12/10/2007 13:15:42

im getting my jaw relined tommorow im so scared!!!!!  =

Name: Heather • Date: 12/10/2007 23:13:33

I have a 2 month old baby girl she was born with a cleft palate and we are haveing prombles with her waight she chokes alot when she eats and after she eats she sounds like she has fluid in her lungs and she spits up out her noes alot does anyone have these prombles and can help thank you  =

Name: Kiara • Date: 12/11/2007 21:04:02

I dont remember if that happened to me wen i was younger but i could make water go through my nose because of the hole in my mouth.
Commenting on "Jesus", u should no feel that way about yourself.  =

Name: momloyd • Date: 12/12/2007 09:41:23

RESOPNSE TO THE TWO MONTH OLD BABY QUESTION
when my daughter was verry little only a few months old she also had the choking problem and always sounded like she was drowing, and yes there was always formula coming out of her nose. It was normal acording to the doctors, but they did tell us to cut the nipple hole in the squezable bottles a bit smaller. that did cut down on the amout that came out her nose. My daughter is now eight years old and is going to go and get her tonsils out in just a few days then three months after that she is going to have a pallet inlargment surgury. They hope that this will stop all the ear infections and hearing problems.  =

Name: allen • Date: 12/13/2007 22:03:41

my son is due to be here in feb and has bilateral cleft pallet, and i was wondering if anyone had any info pertaining to this??  =

Name: Stephanie Torres • Date: 12/13/2007 22:24:33

hello  =

Name: Stephanie Torres • Date: 12/13/2007 22:26:31

im 18 year and a was bor with the cleft palate is has been hard since a was a little girl a think for all of us like this  =

Name: joy • Date: 12/14/2007 21:26:41

my daughter is 9 months old she has a cleft of the hard and soft palate she also has a pierre rubin jaw. she is also tongue tied.she has a feeding tube. has anyone ever used the the haberman soft feeder? not had luck with the regular haberman. couldnt figure out the pigeon kept getting air locked. tried to find directions for it online with no luck on in chinese. she will have surgery around 1 my speech therapist is an idiot that doent help. any suggestions..  =

Name: Heather • Date: 12/16/2007 17:25:37

reply to Joy I have a 2 and a half old we use the haberman bottle I also tried the other one we love the haberman my daugter is going to see a specialist tomorrow she has not gain that much waight is that why your daughter has a feeding tube I also have the directions to the pigeon in english if you would like them I know you can not tighten the ring to tight just put it on very lose what hospital do you go to we go to ST.Louis Childrens  =

Name: Jesus • Date: 12/16/2007 21:06:17

Wrong it's right to feel worthless. I have many problems . As I look at my future I don't see nothing good. This Can't be my destiny. I think suicide is a major one on me but Im not suicidal. Theres many reasons to back me up on the down part of my life. Abortion is my suggestion to parents that are expecting a child with this ugly birth defect. It's down the child a favor that way they don't have to suffer alot as they grow up and enter high school. Trust me on this one 1 The stares never stop 2. Teasing is mean but what they say is the ugly Truth 3. face doesn't look "normal" plus to top it all off if u add those problems that a cleft has PLUS the problems in real life ITS TOO MUCH TOO FUCKING HANDLE . I wish i could have a girlfriend but Im too "ugly" I never had a chance !  =

Name: Cyphrus Omega • Date: 12/19/2007 10:03:25

Your little girl will face hundreds of challenges throughout her childhood. Sadly children have not become any nicer aout things that look different. But if she has faith in her self her family and the friends she meets along the way then se will be fine. You will have to give her all your love and more wen she comes home crying about people asking what happened to your lip. I know I was born with it and got the best doctors available and the surgery went great but the scar remains. if she ever truely becomes depressed from it point her eyes to the movie walk the line the main character has a cleft palate. My family abandoned me the day I was born with it. They threw m in a ditch so please give her your love.  =

Name: martin • Date: 12/19/2007 23:10:07

hey i am a son and have cleft pallet my self im 16 now and to be honest you wouldnt have thought i have got it the technology is so advanced they can do anything and i no every one says it but there really isn't any thing to worry about there will be reli good times and there will be some all time lows and i have had first hand experience about it if u wish to get in touch u can e-mail me at lifewillbegreatbeddow08@hotmail.co.uk
thanx for posting this was lookin for some infromation on cleft pallets as i am not sure wat it reli is as it was not explained to me dierctly  =

Name: Robert • Date: 12/21/2007 04:47:34

I was born with a cleft palet and it was operated on when I was a baby. Cannot remember anything at all about the time. Am now 50 and it has not held me back. You would not know that I had it.  =

Name: drifterjim • Date: 12/23/2007 05:28:16

I amm 66, have a double hair lip and cleft palate. Many surgries, was clled names in my young years, always feeling insecure, married 5 times, my last surgery at 28 tissuse was taken from up inside my mouth making my lip look almost normal, have been chaced by many women, hence the 5 marriages. Check with local collages, they may have an out patitent program that may be fre to help fix these problems. If you have a cleft lip / palate--dont give up--get stronger. I had bad teeth, partial plate at 13, then at 28 all teeth were pulled, work done, dentures a year later, was dark complection and black hair and compaired to Elvis. There are programs out there to help. Dont sit on your butt and feel sorry for your self. If you have a baby with this condition, help them, dont just overlook it, dont think a lot of love will fix the problem, look for help, None of us are perfect, dont look at them as imperfect. If you have this problem try to feel special, yes at 66 I am still incecure, demons of my youth haunt me. But I have tried to be stong in other ways, a good worker, a plesent person, being a little toughfer and smater then the next guy just to show that aperance does not make the person, the attitude and how you carry yourself does. OVERCOME !! Hang in there ! Remember---YOU can be the best at telling hair lip jokes ... LOL ! There are special departments out there for people with special problems..look for them, dig, ask, inquire. Ask family doctor, call state collages, dont give up. Train the people around you not to treat the child differant. Alive with a brain, could have been worse. I suffered a lot, at times still do, but I never gave up.
Good luck...God bless all of you.  =

Name: Becky • Date: 12/25/2007 19:11:52

go to www.smiletrain.org  =

Name: Richard • Date: 12/27/2007 01:13:34

Looking for a child in South or Central America who needs cleft palate corrective surgery.  =

Name: kimberlyann5690 • Date: 12/27/2007 18:12:34

I had a cleft pallet as a baby...it was very tough for my parents and for my family. I had my surgery when i was 9 months old. From what i have heard i am very lucky because i only got the cleft palate and not the cleft lip too. My family helped me out through the recovery. When I started talking i started taking speech and language. i was very upset because once i got into grade school kids started to make fun of me for my talking. It hurt very much so i knew i should be dedicated to learn how to say words properly and not care what other people think. By 8th grade i got out of speech and language and now today I am now 17 and i will be 18 on may 6 and i am doing really great with the speech. you could have never tell that ive had a cleft palate. I am thankful for the people who have cared for me during this whole situation.  =

Name: get over it • Date: 12/31/2007 21:15:06

To all the people that say they wish that there mom would never had them because they have a cleft lip cleft palate I think that you need to realize how lucky you really are there are kids out there that are born with much bigger problems life thearting even some kids dont even have a chance my daughter was born with a cleft and I thought oh my god but when I went to take her to the childrens hospital and seen the kids in there with down sydrom and other health issuse that they where born with I said to my family and to my self we are really lucky this can be fixed with my little girl shure it is hard but she will be fine and I will have her in my life and I know that she will have to go throurgh surgery but she is not on a waiting list on her death bed like some familes have to go through I know how lucky we are and I know when my little girl gets older she will be thankful to and never have thoughts like jesus that has replied and some others get over it and be thankful  =

Name: momaloyd • Date: 01/01/2008 23:00:53

to those of you who think that cursing on here is nesacery thankyou for showing the rest of us how inteligent you really are  =

Name: Rir • Date: 01/03/2008 07:43:35

Hello everybody  =

Name: Rir • Date: 01/03/2008 07:46:13

I also have a baby girl born with a cleft pallet (only), she's 4 and a half months old now, and her doctor said tthe best timing for the surgery is at 10 months, so now we're waiting, I'm just worried about general anesthesia and for her not being able to eat till after the surgery, and how much pain she will have to go thru!  =

Name: Heather • Date: 01/03/2008 22:11:51

My little girl she is 3 and half months old she was born born with just a cleft palate her surgery is when she is about 11 months We been having prombles with her waight have you had the same she goes to ST.Louis Childrens they are great she just has aparcial palate it is her soft palate but she also has rubin jaw  =

Name: Jesus • Date: 01/06/2008 21:51:15

this is to "Chris" ... I totally feel what you are filling especially how hard life can be in teen years .... Will I go to prom? Will I ever have a GF? Will I be able to hide the scars i have on my lip? .... Life is really hard man  =

Name: chris • Date: 01/06/2008 22:50:37

To "jesus"- yea man I am 20 now. Highschool was fun for me- I had alot of friends and that kind of thing but always just knew I was different and i hated it. Even if people didn't mean too like people I didn't know treated me so differently. I had to like prove myself to them. Now I am in community college, or was, but it sucks so much worse. People just stare at me ALL THE TIME. Like I have pretty high self esteem but sometimes I don't even go to class unless I am early so that people don't stare at me on the way to my seat- it's so shitty. I knew if I ever wanted a girlfriend I had to get her in highschool because believe it or not girls are more accepting in highschool- no bullshit of the real world yet. But I fucked up and passed to many opportunities with hot girls cause I am a dumb ass and now it is like impossible. It is impossible to meet a girl like at a bar or a normal place like a grocery store because the shitty thing is that first attraction is based on looks dude- completely. If I was to go up to a hot girl and be like hey how ya doin or some shit she might be kind enough to humor me. And the girls i know it's just like i am the funny guy to hang out with- that's I'll I will ever be man- you know what i'm sayin- it's shitty as fuck. So ya I would advise parents to just abort- like for real- take it from someone who tried to embrace and work with this- it's not worth it for the kid- please believe that- and it's even worse for girls. The stares really don't stop- they get worse- bars suck it's just not a good thing- it really isn't. Life truly is harder for us because we are like just odd looking enough to totally understand how weird we really do look. But jesus I don't know how old you are man but if your still in highschool use you humor to get with some girls and hold onto one due- cause it only get's worse and harder- believe me man.  =

Name: Aunt • Date: 01/07/2008 14:40:32

My niece has a cleft palet. I was wondering is your hearing and teeth affected by this? If so how and is it painful?  =

Name: Summer • Date: 01/07/2008 18:40:41

I am 26 years old and I have a bilatereal cleft lip and palate and so does my one and a half year old daughter. Let me start by apologizing to all parents who already have a child with or are expecting a child with a cleft lip/palate. There are sooo many NEGATIVE people on here who obviously like to blame all of their problems on a a cleft lip/palate. Please do not let them scare you! It seems to me that the true problem with these people seems to be a bad attitude about life in general, not a birth defect. All experiences are different and some have it worse than others. I do sympathize with these people that feel they don't look as good as they could. I do remember being made fun of as a child. Even now, as an adult, people say stupid things. But, I must say that I have ALWAYS had boyfriends and dates and was always very popular in school. I married a handsome and wonderful man and to be honest, a cleft lip/ palate didn't play a big role on my life and still doesn't. I don't mean to sound arrogant, but I am so tired of all of these people acting like a this birth defect is the end of the world! Yes it is unfortunate and if given a choice, I certainly would not choose to have one, but that's life. Do you know how many people with cancer or life threatening illnesses would trade places with us? Every time I go into a chilrens hospital, I feel lucky that my daughter and I were ONLY born with this fixable defect!  =

Name: Summer • Date: 01/07/2008 20:10:57

This is to Jesus.....
I just wanted to let you know that a bad attitude is the main reason guys don't get hot girls, regardless of a birth defect. Don't listen to Chris! Feeling sorry for yourself and having a huge chip on your shoulder is also not attractive and will only bring attention to your defect. I cannot imagine being so arrogant as to think that every single person is spending their precious time staring at me. Let me also tell you about the bars that you "should stay away from"; I always had a ton of guys hitting on me and asking me out. Bars and clubs are a total ego booster for me. If I wanted to feel sorry for myself, like Chris, I COULD say that these guys are hitting on me as a cruel joke. Like I said before, a cleft lip is not the issue here; it seems to be mental rather than physical. You will have girlfriends and get married and live a normal life, if you choose to. Even if I did not have a birth defect, I would never get involved with a guy with such a horrible view on life. I can't think of one girl that wouldn't say the same thing.
If Chris was not born with a cleft lip, he would find something else to blame for his "horrible" life.
I'm not saying it's fun to be born this way or that I can't relate to some of the feelings I'm reading, but to feel that you should be dead or never have been born? That calls for a reality check. Has anyone ever seen the movie Mask, or The Elephant Man? Obviouly not, or they wouldn't be feeling so self concious over something as simple as a cleft lip.
I can only hope that parents that have a baby with or are expecting a baby with a cleft relize that these bitter attitudes are the bad genes that should not be passed on, not the clefts. I am more afraid of my next child having this personality trait; how horrible. A cleft you can fix, a terrible personality and bad attitude? No,not so much.These people s feelings are a small percentage and I beg you not to pay any attention.
I understand wanting to vent and share stories with eachother, but some of what I'm reading here is just plain self pitty.  =

Name: Jesus • Date: 01/11/2008 00:33:55

this is to "Chris" yeah man i totally agree with you right now Im 17 halfway thru high school i would like to chat wit u more or whoever wants to chat wit me add my hotmail it's
"Birdman322@hotmail.com"  =

Name: Jesus • Date: 01/11/2008 00:35:57

this is to Aunt ... it's really painful growing wit a cleft believe me it's not worth living it unless u are so rich u are able to do Top-Of The Line surgery that way the child feels and looks almost 100 percent normal and u can't tell that they were born with it. My doctors probably didnct give a shit.  =

Name: Jesus • Date: 01/11/2008 00:41:37

I'm not really asking for self pity here. Im just looking for help. I know cleft can be fixed as "summer" says. But I need surgery like people that specialize in cosmetics. If they could do that that's pretty much all I ever wanted. It would increase my looks make me feel better. and believe me normal people say "get over it" but if they were put in my position they wolndt say shit . It's 100 percent true that cleft palates brings ones life down.  =

Name: Summer • Date: 01/11/2008 02:38:50

To Jesus.... I totally agree that you need good surgeons. We took my daughter to the Seattle Childrens Hospital and they made her severe cleft look AWESOME. At that hospital, they do a lot of work for poeple who can't afford to pay them and they truely have talented surgeons who use top of the line techniques. Have you tried to get in touch with one of these hospitals? Every cleft person should have the right to a top of the line cosmetic surgeon, regardless of money issues. You should feel like people aren't giving you a second look. That's the goal. I didn't feel totally like I looked really great until I got touch ups when I was 20. Please don't lose hope!  =

Name: mal • Date: 01/11/2008 06:09:04

to the lady who wrote get over it.. i so agree with u in so many ways, my son was born with a cleft palate and i was like my god what did i do wrong but i tell u there are way worse off people then him and i think people need to visit the hospitals and take a look at what other families have to go through.. my son is 15mths and he has had his operation and he is fine .. and yes he has to have speech theropy and go to lots of dental in the future years .. but it is miner to other people.. if this birth defect is put out there we can help these people feel more excepted.. i am a day care worker and just in the centre i work there is 3 cleft children and they are great kids. and have potential to be who they want to be.. some children are nasty but they are nasty to big kids and freckle kids and poor kids.. so kids with a cleft would feel just as bad as the other children, its unfortunate but true.. i love my son and i wouldnt swap him for any one he is perfect.. and all the cleft mothers i have met think exactly the same .. so i hope all the cleft children try to find some way to do the best they can and relise they are just as important as the next person..  =

Name: mal • Date: 01/11/2008 06:19:10

RIR... just to answer your question . my son was born with the cleft palate to and i was really worried about how he would be after the op , but they have them under really good pain management . the arm bands he dealt with fine as well. i think its more annoying for us then them. and the feeding part can be a little difficult but u find a way to cop for the 3 weeks.. if you have any other questions ?  =

Name: Jesus • Date: 01/12/2008 13:04:17

I have had surgeons at Shriners hospital @ Oregon but they din'ct do as good as job as I wanted to. they sorta made my nose look normal. but in this life most of my fucking problems come from cleft palate . the term "get over it" is just ridicolous. First examples are. Speech is really horrible everybody makes fun of me for it and what really hurts the most is that when people talk to me I don't talk back to them cuz I can't talk right. I try hard but lifes trhow shit back at me. And i look really ugly when I ask girls out their like "ur too ugly". and get made fun of evryday cuz of the way I look and talk . I also get made fun of when I do stupid things but that doesn't have to do anything with the Cleft Palate. only the speech and looks. If i could talk rite and look better that be it  =

Name: MAL • Date: 01/12/2008 17:52:35

JESUS.... i am really sorry, life seems hard on you. we are in australia and the doctors over here are fantastic ... is there some speech facility you could visit to get some extra help, and maybe some further operations.. you might find that people arnt as judge mental as you may think, i find that i notice cleft alot more and its not cause im judging ,its because i face it everyday with my own son. 1 in 700 babies is quiet alot so you might find people will no maybe 1 person they no with cleft.. i am very open about my sons cleft and people have been quiet understanding.. i think its sad for you as you would have lots of potential to be someone but cleft seems to be holding you back.. maybe you could go see if there is something else on offer for you. friend of ours just had a piece of bone taken from her nose and put into her lip ,you cant see any scaring it looks great.. i hope you find someone who can help  =

Name: Jesus LPPPP • Date: 01/12/2008 21:34:10

this is to "mal" ya lol i know I can be something greater in life . I get 4.0s and honore roll but thats bout what im good @  =

Name: joy • Date: 01/12/2008 22:16:47

is your baby feeding any better. i would get a feeding specialast or a really good speech therapist. i havent had good luck with people helping my little one got a feeding tube at 5 weeks. shes now 9 months. and still not feeding. good luck with your baby would love to know how she is.  =

Name: diane • Date: 01/18/2008 16:23:12

hello my name is diane and i live in the northeast of england i have a daughter of 18 years old and she was bone with a hair lip and pallet she has come out of hospital after her bone graft been done for the second time now at home please dont worry it nothing she goes to the R V I hospital for her treatment they are great at the hospital.  =

Name: Rimom • Date: 01/21/2008 21:01:07

Has anyone had to take there child to get a x ray done because of prombles with eating rice ceral is it common for a cleft palate baby spit it up through the nose and choke because of it?  =

Name: momaloyd • Date: 01/22/2008 10:16:38

When my daughter was a baby every time that she had anything to eat it would pour out of her nose and she would also choke on everything. It is a normal thing for the cleft palet babys to have problems with chokeing and spiting up everything through thier noses. they do out grow it:)  =

Name: hannah • Date: 01/22/2008 15:28:39

Hi, My name is Hannah from Philippines. I am 20 year old and I have a clef pallet. I am pretty concious about my face especially into my nose. Anyways, I could speak straigth but the problem is my nose I mean it is not balance... I am eager to go to the doctor and have some operation. I hope there is a sergeon will give me a tips.  =

Name: sherri thompson • Date: 01/24/2008 00:07:24

My son had a soft cleft pallet...he had surgery last week and is doing great, any questions you may have...let me know...take care  =

Name: Rielysmom • Date: 01/26/2008 17:51:09

My daughter was also born with a soft cleft and some of the hard palate she is 4 months old and has a waight problem did your daughte?What cleft palate team did you go to we go to ST.Louis Childrens we love them we just need her to gain whaight  =

Name: christina • Date: 01/28/2008 16:27:21

I had a baby boy August 16 2007. He was born with a cleft lip and pallet.
His surgeon is Dr. Lisa Buckmiller at Childrens Hospital in Little Rock Arkansas. He had his lip repair surgery in November. She did an amazing job. She has been profiled on the Today Show and Discovery Health channel. She does missionary work in China and is a true gift to so many people.  =

Name: christina • Date: 01/28/2008 16:52:18

To jesus:
I can't imagine what you are going through. My 6 month old son was born with cleft lip and pallet. I will try and teach him that looks are superficial and fade. It's what is on the inside that counts. I know people can be cruel. I had plastic surgery when I was 21 because of people teasing me. It made me feel better at the time. As I got older I realized that who I was on the inside was far more important. I think talking about it with people who have the same issues is very important. It offers support and helps you to understand YOU are not the only one and you are NOT a freak. There are good people out here just keep reaching out..  =

Name: josie • Date: 01/31/2008 08:56:00

My little brother is 6 months, he was born on the 14th December 2007.He has the worst case of cleft Pallet.  =

Name: Bradford • Date: 02/13/2008 00:22:00

Hello First let me tell you that your daughter has a long road ahead of her and you as parents are going to go through more pain and heartache than your child. I was born with a Cleft pallet and lip and I am now 25. I went through all of the sugerys and procedures but I never took the time to look at what it was doing to my mother. and as long as you stay strong you and your child can get through it. But the techniques are a lot better now than when I was born. good luck to you on your journey as well to your daughter.  =

Name: kim • Date: 02/18/2008 21:07:49

This is to Aunt. When i had a cleft palate as a baby i did get tubes in my ears later on in life but im not quiet sure if that was from the cleft palate. and i do have really small mouth and really small teeth but for me i like having small teeth. if you get cavaties when you get older they dont hurt so bad as bigger teeth do  =

Name: SARA • Date: 02/21/2008 10:04:44

dOES ANYONE KNOW WHERE TO GET THE NIPPLES FOR A BABY BORN WITH CLEFT PALLET ??ANY ONLINE PLACES..OR NUMBERS WOULD BE APRECIATED ..  =

Name: Justin • Date: 02/21/2008 16:32:39

Hello, I'm 23 right now and I was born with a clef pallet. Yes, it was a long road to get to where I am today. When I was born in Aug. of 1984 in Lubbock Texas my parents had no idea what was to come. I went through several sergeries and one I can still remember and have nightmares about. After that sergery my mouth was to stay open for two weeks. Let me tell you that was bad. I had to have special bottles to feed off of cause I couldn't suck and most of the nipples back then were useless for me. Today you wouldn't know that anything was wrong beside the muffled voice of clef pallet ppl out there and a tiny holr that remains in the roof of my mouth. I to have a small mouth. I have met three other ppl with clef pallets and they also have the small mouth and muffled voice and we were all tease by those traits gowing up in school.  =

Name: Heather • Date: 02/21/2008 22:59:21

This is to Sarah you can go to www.medela.com and go to special feeders or you can call1800-435-8316 and ask for specialfeeder  =

Name: KAT • Date: 02/25/2008 12:32:54

I HAD A DAUGHTER THAT WAS BORN WITH A CLEFT IN THE SOFT PALLET AND IT WENT UNNOTICED FOR SIX AND A HALF HOURS. WHEN THE DOCTOR THAT CHECKED HER AT BIRTH CAME BACK TO ME , SHE SAID THAT WHAT SHE THOUGHT SHE WAS LOOKING AT WHEN SHE CHECKED HER AT BIRTH WAS THE BACK OF HER THROAT.  =

Name: chris2810 • Date: 02/27/2008 09:34:05

hi all im 43 male from the uk i have a hair lip cleft pallet i have children young and older yes my younger days were very hard untill i made a few changes to my life witch wasnt the right thing to do and yes i still have hang ups bout the way i look i was a very angary person it was all bout confidence i had none so to all you youner people out there build your confidence and you will see the change thanks chris  =

Name: christopher charles west • Date: 03/03/2008 08:13:46

well I was born with a cleft pallet and you should pure-ay all of it's foods till can eat solids.  =

Name: jackie • Date: 03/05/2008 19:32:31

hi  =

Name: Jackie • Date: 03/05/2008 19:35:10

hey i have the same thing im 13 everyone say you cant notice my nose but you can because it's curved and i feel like nobody likes me even though i have friends  =

Name: kayleigh • Date: 03/05/2008 20:23:38

hi i was 16 when i got preggy and i gave brith at 17 and once i gave brith my babby had to go see doctor and they said to me she has no roof of her mouth cleft palut she has had repaerd now but i still have problems and i haite coz i could not breastfreed or she could not suck on dummey  =

Name: kayleigh • Date: 03/05/2008 20:29:43

hi Jesus no dont say that coz i have 9 mouth old babby girl which also had cleft pault and i so upset about it im only 17 y old i had watch my 9 mouth old babby go through pain coz of operashion it took 4 hours and it in leeds gernaly infremary in trust i know how u fell here my addy if u would l ike to talk to me crazy_kazza09 @hotmail.co.uk thats if anny one woyle like to talk to me  =

Name: kayleigh • Date: 03/05/2008 20:33:45

mommyinwaiting hi my name kayleigh trust me i know how u fell and my babby got no eating problems but the frist day she had repair done yes she would not eat and the scound she starsted to eat and my babby girl now is slowley gettign better but till in bit of pain  =

Name: kayleigh • Date: 03/05/2008 20:58:04

oi think it is till hard even thro my babby had cleft reparid  =

Name: kayleigh • Date: 03/05/2008 20:59:57

to christopher my babby has to smooth sloid she cant even have lumpe food wot u buy in babby jars  =

Name: Deirdre Jessica Willows • Date: 03/05/2008 23:17:19