| Name: Rir | Date: Jan 3rd, 2008 7:43 AM |
| Name: Rir | Date: Jan 3rd, 2008 7:46 AM |
| 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: Jan 3rd, 2008 10:11 PM |
| 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: Jan 6th, 2008 9:51 PM |
| 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: Jan 6th, 2008 10:50 PM |
| 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: Jan 7th, 2008 2:40 PM |
| 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: Jan 7th, 2008 6:40 PM |
| 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: Jan 7th, 2008 8:10 PM |
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: Jan 11th, 2008 12:33 AM |
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: Jan 11th, 2008 12:35 AM |
| 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: Jan 11th, 2008 12:41 AM |
| 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: Jan 11th, 2008 2:38 AM |
| 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: Jan 11th, 2008 6:09 AM |
| 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: Jan 11th, 2008 6:19 AM |
| 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: Jan 12th, 2008 1:04 PM |
| 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: Jan 12th, 2008 5:52 PM |
| 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: Jan 12th, 2008 9:34 PM |
| 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: Jan 12th, 2008 10:16 PM |
| 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: Jan 18th, 2008 4:23 PM |
| 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: Jan 21st, 2008 9:01 PM |
| 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: Jan 22nd, 2008 10:16 AM |
| 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: Jan 22nd, 2008 3:28 PM |
| 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: Jan 24th, 2008 12:07 AM |
| 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: Jan 26th, 2008 5:51 PM |
| 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: Jan 28th, 2008 4:27 PM |
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: Jan 28th, 2008 4:52 PM |
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: Jan 31st, 2008 8:56 AM |
| 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: Feb 13th, 2008 12:22 AM |
| 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: Feb 18th, 2008 9:07 PM |
| 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: Feb 21st, 2008 10:04 AM |
| 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: Feb 21st, 2008 4:32 PM |
| 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. ↑ |
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