| 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. ↑ |
| Name: Lary in Laffy | Date: Nov 2nd, 2007 5:18 AM |
| 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: Nov 2nd, 2007 5:29 AM |
| 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: Nov 14th, 2007 8:35 AM |
| 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: Nov 16th, 2007 12:44 AM |
| 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: Nov 16th, 2007 6:27 PM |
| 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: Nov 17th, 2007 12:18 AM |
| 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: Nov 17th, 2007 4:09 PM |
| 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: Nov 18th, 2007 2:26 AM |
| 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: Dec 9th, 2007 1:01 PM |
| I have a clef pallet , but doctors dont know how it happens ↑ |
| Name: Jesus | Date: Dec 9th, 2007 6:17 PM |
| 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: Dec 10th, 2007 1:15 PM |
| im getting my jaw relined tommorow im so scared!!!!! ↑ |
| Name: Heather | Date: Dec 10th, 2007 11:13 PM |
| 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: Dec 11th, 2007 9:04 PM |
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: Dec 12th, 2007 9:41 AM |
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: Dec 13th, 2007 10:03 PM |
| 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: Dec 13th, 2007 10:24 PM |
| Name: Stephanie Torres | Date: Dec 13th, 2007 10:26 PM |
| 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: Dec 14th, 2007 9:26 PM |
| 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: Dec 16th, 2007 5:25 PM |
| 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: Dec 16th, 2007 9:06 PM |
| 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: Dec 19th, 2007 10:03 AM |
| 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: Dec 19th, 2007 11:10 PM |
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: Dec 21st, 2007 4:47 AM |
| 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: Dec 23rd, 2007 5:28 AM |
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: Dec 25th, 2007 7:11 PM |
| go to www.smiletrain.org ↑ |
| Name: Richard | Date: Dec 27th, 2007 1:13 AM |
| Looking for a child in South or Central America who needs cleft palate corrective surgery. ↑ |
| Name: kimberlyann5690 | Date: Dec 27th, 2007 6:12 PM |
| 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: Dec 31st, 2007 9:15 PM |
| 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: Jan 1st, 2008 11:00 PM |
| 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: Jan 3rd, 2008 7:43 AM |
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