| Name: tami | Date: Mar 17th, 2008 2:30 PM |
| i have been checking for sum funding with the braces my daughter needs ↑ |
| Name: tammi | Date: Mar 17th, 2008 2:33 PM |
| ok maybe i am doing this wrong or sumtin who knows i might be a bit impatient is any one receiving my e mails ↑ |
| Name: tami to jesus | Date: Mar 17th, 2008 2:36 PM |
| hey there it seems like u and i are the only active members in this forum is there any thing u can help me with 2 find funding for my daughter ↑ |
| Name: j ] Tamy | Date: Mar 18th, 2008 9:01 PM |
| I don't really know where u can find help for funding but shell need as much emotional support as she does physically it is way harder for girls to live wit a cleft. ↑ |
| Name: Yolanda | Date: Mar 23rd, 2008 1:08 AM |
| we just had a baby boy with a cleft lip and pallet so im wanting information as well and i know exactly how you feel if i find any thing i will definately email you back but i am currently looking for some of the same information ↑ |
| Name: unsure | Date: Mar 25th, 2008 3:39 PM |
| I slept with someone who had cleft lip and pallet and now I am pregant. What are the chances of my baby having it ↑ |
| Name: Sam | Date: Apr 3rd, 2008 10:53 AM |
| I was born with Cleft Pallet and other problems, but never have I let them stop me from doing something that I want to do. My moto is "If I can't do it your way then I'm going to do it my way, but its going to be better then your way". If you or someone else you know has this disease or has another one Be by their side don't hide anything from them, Let them know that your there every step of the way. If your son or daugher has it let them know right off the bat what they have, explain to them what it is DON'T hide it from them!!! ↑ |
| Name: Summer | Date: Apr 4th, 2008 5:05 PM |
| TO SAM: THANK YOU! As I said earlier in the forum; it's so nice to hear from someone else that didn't let a cleft lip/ palate ruin their life! I have one and so does my daughter. I am going to raise her the same as my parents raised me: Be their for them, but don't make them feel different or make it an issue all the time. I believe the worst thing a parent can do is draw attention to it and make the child feel like they are different. Let them vent and share their feelings and cry on your shoulder. Be there for them, but don't baby them and allow them to feel sorry for themselves. That's giving them a reason to have a bad attitude. ↑ |
| Name: kchaires | Date: Apr 9th, 2008 10:38 AM |
| Looking for help. My daughter had her palet repaired when she was 10mths old. She is now almost seven but was are dealing with an issue of her eating things that are inappropirate. Has anyone ever experienced this??? They think it may have to do with the scar in her month. ↑ |
| Name: momaloyd@peak.org | Date: Apr 10th, 2008 12:58 PM |
to unsure
The chances of the baby having cleft are around 35% - 50%
Having a baby with cleft is not as bad as a lot of people try to make it sound my daughter is 8 and was born with a cleft ↑ |
| Name: summer | Date: Apr 10th, 2008 3:14 PM |
TO UNSURE
I have a cleft and my uncle has one. I was told by numerous genetic counselors that my baby had a 4% chance. It really depends on who in the family has them and the type of cleft. If the father or mother of the baby has one, I was always told you're baby has a 4% to 7% chance. I wouldn't worry too much. If you look up some info online, you will find percentages also. ↑ |
| Name: donna | Date: Apr 11th, 2008 10:07 AM |
| i have a 9 months old baby girl with a celf pallet , which i didnt no she had until she was born it comes with alot of problems with feeding times but u learn to cope and my little girl eats very well and just had her first surgery to correct her pallet which i wont no weather it work untill couple of week ↑ |
| Name: donna | Date: Apr 11th, 2008 10:34 AM |
| i have a 9 months old baby girl with a celf pallet , which i didnt no she had until she was born it comes with alot of problems with feeding times but u learn to cope and my little girl eats very well but sometimes chokes and it comes out of her nose which is very messy .she just had her first surgery to correct her pallet which i wont no weather it work untill couple of week she been tube fed since she was born and still have the tube as she has no suction she carnt keep her dummy in n dont take much from her bottle but hopefully now she had the surgery things might get better. ↑ |
| Name: Tiffany G. | Date: Apr 19th, 2008 11:55 PM |
| I am currently 17 years old and was born with a cleft lip and pallet. The doctor only fixed my lip when I was a baby, but I still have my cleft pallet and was wondering if anyone had any information on how I can get my cleft pallet fixed. Please and thank you. ↑ |
| Name: ariannna | Date: Apr 22nd, 2008 6:50 PM |
| i dont hav cleft pallet but i know about it b/c i am doing a project on it ↑ |
| Name: Jen | Date: Apr 27th, 2008 5:56 PM |
| I have a 7 month old with a cleft soft palate. We are having a lot of trouble with solids. It seems like they get stuck in his hole (in the back of his throat) and come out his nose instead. So, it seems to be swallowing issues. Any tips with this would be helpful. Please contact me at jlshewmake@hotmail.com with a subject line regarding cleft palates. Thanks so much! ↑ |
| Name: ty | Date: May 4th, 2008 10:37 PM |
| I was born with it i am 27 now ↑ |
| Name: rovina | Date: May 5th, 2008 8:38 PM |
| i am 35 years old and i was born with a clef pallet. i had surgery when i was 2. i didn"t have the lip. my mother had a very difficult time because nobody knew i didnt have a pallet until i was sent home and returned to the hospital numerous times than dr. bergert at childrens hospital in baltimore seen me and discovered the problem . over the years i had dental problems , and some speech problems with a speech therapist i was able to talk as well as the next person. watch your babies hearing i also had hearing issues that with tubes was also corrected . i am sure your baby is beautiful .just encourage her and she will blossom into a beautiful woman some day. ↑ |
| Name: bisbridgie | Date: May 12th, 2008 12:31 AM |
| my grandaughter who is 6 & was born with cleft pallet lost her 2nd tooth today on mothers day...yeaaaa! :) But shocked us all by shoving it up the opening in the roof of her mouth....my daughter has taken her to ER but I am going crazy with worry. anyone have a similar experience??? Please tell me what will happen if they can't get it out...will she eventually swallow it? ↑ |
| Name: Just Me | Date: Jun 5th, 2008 4:51 PM |
Being the Mum of two beautiful children, and grandmother of two equally beautiful children, I know that I would find it so hard and sad to see any of them suffer the problems that a cleft pallet can bring. But that is exactly what my parents had to do, because I was born with a cleft pallet. I never knew or understood how hard that must have been for them, to watch me grow up with the unkind remarks children make and some adults too, and also have to watch me go through operations etc. I think possibly it can be equally hard for parents of children with clefts, as the children themselves. I shall always be grateful to my mum and dad because I was brought up not being held back from anything - they gave me freedom and didn't try to hide me from hurt, I guess they knew that I had to learn how to cope and how to handle it.
But I just wanted to say, that for any one that feels that having a cleft pallet is the worse thing which can happen to you, it's truly truly not. If anybody has a problem with you, because of your lip or your speech, it's 'their' problem, not yours - so believe that, and let them deal with it. If they don't like it, there is nothing you can do about it, and to be honest, are they acually worth the effort of letting you feel hurt? Ah, see, I know, because I've felt that hurt so many times, and been made to feel second class. But I'm not second class, I'm as good as the next person. It's what's inside me which is important and my personality. Aw I know what you are thinking - that's easier said than done. I so know it is. Its hard when you go for a job interview and the interviewer tells you that you arn't suitable for the job, because telehpone work is involved - and there are times when narrow minded people can't see further than your voice. But other people suffer the same kind of igorance in other areas, be it race, colour or disability - not just us.
My husband married me because he loved who I was, and am. My friends see me for who I am and my employer employed me for who I am, and I do answer the telephone at work, and I 'speak on the telephone' to many many people from all
over the the world. See yourself for who you are - and not just a voice which isn't quite the same as the person next to you. Everyone is different in some way - so be stronger because of it, not weaker.
It's good advice, and it's not easy, and there are times I am still learning how to put it into practise. I'll be quiet now ;-) but I just wanted to say, this page was a great find for me - throughout my life I have never met anyone else with a cleft pallet - and I have never talked about it to anyone - so this has been a first for me. I will always be selfconscious of my cleft pallet, and yes, if truthful, it does hold me back sometimes - but i won't let it fully win. ↑ |
| Name: Shannon | Date: Jun 6th, 2008 9:31 PM |
| My little cousin Thomas was born with a Cleft Pallet and he is getting plastic surgery. ↑ |
| Name: daddytimo | Date: Jun 7th, 2008 5:59 PM |
| we just found out he other day that our son that has not been born yet has cleft palate. he is 20-22 weeks. my wife soon to be went to the doctor on the 5th of june for an ultra sound and she called me up after she had her ultra sound done and told me that our son has cleft palate. she would not stop crying so the doctor called her later that day and said that they would like her to go to the river side valley hospital at the university of minnesota to have a levle 2 ultra sound done. i was out of town down in illinois working so i was unable to go so she took her sister down there with her. she called me back on the phone just balling and i only had to ask her 2 times if she wanted me to come home. she said yeah and i was out. i got home and i told her that we will get him fixed up as soon as we could. i really wish i was with her to comfort her when she heard the news. there still is times when she just starts balling and i come over sit next to her and comfort her and tell her that everything is going to be okay. the she starts talking about the way people are going to look at him and yeah i get a tear and i tell her that people will ask questions and want to know what is wrong with him. he is my son and i would do anything for him i will make sure that he will have a good life and we will always be there for him. ↑ |
| Name: Summer | Date: Jun 9th, 2008 3:01 AM |
To DADDYTIMO
I remember when I got my ultra sound done and finding out that our daughter was going to have a cleft palate. I know what you and your wife are going through. I was sooo upset and became very depressed. My husband was much more okay with it.
I don't know why I was so worried, being that I too have a cleft lip and palate. I was mostly worried, like your wife, that she wouldn't turn out looking very good or that people would stare at her. My daughter is 2 now and looks amazing! People (even little kids) can't tell that she has one. I am 27 and was used as a guinea pig for the surgeries they are using now days. I think I turned out well, but I am jealous of how my daughter looks!
I can't speak for everyone, but having a cleft lip and palate never played a big role in life. My parents never babied me and never made it an issue, so it never was. That's how I am going to raise my daughter. You and your wife won't understand until well after your baby is born, but everthing will be okay. It's not nearly as bad as you imagine it to be, I promise! The MOST IMPORTANT THING: find really good surgeons! Ask for before and after pictures, do research and don't ever settle. My daughter and I both had severe bilateral clefts and with todays techniques, there is no reason a child shouldn't turn out looking awesome. If you or your wife need any info or anything, I'd be happy to help! But, keep your heads up and I know that you will end up wishing you hadn't worried so much! ↑ |
| Name: daddytimo | Date: Jun 9th, 2008 10:33 PM |
to summer
thank you for the inspiring message. she is going to have another aultrasound on the 2nd of july. i will be home for it. after that ultrasound is done we are going to take a shuttle down to the university of minnesota to see the facial doctors. well seeing how you have went through it twice well once with you and once with your daughter, i was wondering if you could give me some questions that we could ask the doctors. i have some and she has some and i asked her to ask her doctor for some things that we could ask when that time comes. but i know i would not beable to ask the right questions. we are going to find really good doctors to fix our sons cleft palete and lip . b4 our son is born i know that we will have many questions and we will have many answers. all that i need to do is keep her strong and make sure that the is fine. yeah i know its hard for us right now but when the time comes and our son is born will be the one of the happiest moments in our lives. ↑ |
| Name: Summer | Date: Jun 10th, 2008 2:55 AM |
To DADDYTIMO
I would be happy to make you a list of questions. I'm so glad that you will be there for her ultrasound. I was lucky enough to have my mom, sister and husband there (believe me, I needed them!) Do you guys know if your son has a bilateral or unilateral? I would also like to show you some before and after pictures of my daughter and myself if you are interested. When my daughter was born, I cried because her cleft was so severe. I was scared that she would not turn out well. We used a device on her called a NAM. This was a device she had to wear 24/7 before her first surgery to get everything aligned. At the time my husband Iand I were living in Alaska (we're military) so we had to fly our daughter every 10 days to Seattle from the time she was 3 weeks old until 4 months old. My e mail adress is mottman55@yahoo.com if you or your soon to be wife would like to e mail me or see pictures. I will also give you some questions that might help! My uncle also has a cleft lip and palate, so I'm starting to become pretty educated in this field, unfortunately! ↑ |
| Name: Mommyof4 | Date: Jun 10th, 2008 10:14 AM |
To Summer~
Hi this is DADDYTIMO's soon to be wife :) I have read your postings back and forth and I really appreciate your kind words. Its nice to know that there are other parents out there going through or have gone through the same emotional rollercoaster that I seem to be riding right now. I would LOVE it see pictures of your daughter :) I m sorry, how old is she now?
I just got off the phone with the hospital that did the level 2 ultrasound and he has a unilateral cleft palet and then of course the lip seperation up into his nostrial. I guess that is better news then I could have hoped for.....So far. Its so hard though to see the palet through an ultrasound, but they did not see any problem with his left side palet at all, and I have a 3D picture of his left side, and its perfect. Of course I am trying to get AS MUCH information as I can on this so I can understand it and better cope with it. He is my little miracle and I love him to the moon and back, I just feel out of sorts that my unborn son has to go through surgery, when at 27 myslef have NEVER had surgery. Thanks for being so great though, I appreciate the way you are offering kind words and support, theres not many people like that out here :) Talk to you soon. OH my email is jerriannejoy@yahoo.com ↑ |
| Name: Brittney | Date: Jun 15th, 2008 1:39 PM |
| I am also going to have baby girl and she has a Bi lateral cleft pallet. Most of the sites i have been to now have no real info on them just a bunch of hear say stuff on them but its cause by a folic asid difficence. And yes people it can be passed on through the father or mother ther is and a 4 percent chance of it. The father of my baby had a a cleft palet it was up the middle and extended all the way to the pallet. As you know that is the worse case is up the middle. with that I think the last surgery is done at the age of 8. i think! As for my part it is hard knowing what people will say and as you know as parents to be is hard and i know my boyfriend isnt ready for that cause he went through the same thing i think knowing his child will have a cleft pallet brings back the memorys of not being "Normal" but we all know how kids can be and he dont want the same for his own daughter. But i know since he had his done surgery has gotten alot better since the 80's and i Just hope and im sure all the moms to be with a baby with a cleft wants there kids to look normal. ↑ |
| Name: diane | Date: Jun 17th, 2008 4:30 PM |
| i was born with a double cleft palate but no hair lip i am 51 and thanks to my mum who by the way is 80 now although she dosnt look anything like it she took the time to teach me how to talk so that i could lead a normal life i still have problems with my teeth but i without that that help from my mum i dont know where i would be now we all have a hill to climb but with new technology we will all get there so look forward and be brave to all of you out there you are not alone with love diane ↑ |
| Name: Autumn's Mom | Date: Jun 18th, 2008 11:28 PM |
| My daughter was born with cleft palate (only palate) affecting the soft and went a litte into the hard palate. She had her surgery when she was 10months old. We didn't know until 2 days later. Autumn was sent to the NICU for breathing issues that was dealt with quickly, it was when I was trying to breastfead is when we knew something was wrong, she couldn't latch on. No matter what we tried we could not get her to latch, there was no suction we then tried bottle feeding and that didn't work either again she couldn't get anything out. The nurse tried every bottle to a soft nipple, premature baby nipple nothing worked, she was getting tube fed at the time to get nourished. The second day of trying it was like a light went on over the nurses head. She went got on gloves, got a flash light and came and checked her throat and discovered that she had a cleft palate. I was heartbroken, I was so looking forward to breastfeeding my daughter, getting the bond that my son and I shared. It was definiatley difficult to accept. ↑ |
| Name: Autumn's Mom | Date: Jun 18th, 2008 11:40 PM |
| I have to bring a brighter note, My daughter despite her disabilities that she is living with more than just her cleft pallet repair, She is very happy, loves life and I wouldn't change her or anything about her. The surgeon was great and did an awesome job! She is getting a ton of support from home and outside influences, she is a bit nasley when she speaks and she still has difficulty eating foods with two consistancys like liquid and solid together like noodle soup, oranges. but as she grows she definitaley is progressing. ↑ |
| Name: ilce | Date: Jun 19th, 2008 2:25 AM |
| do you think that having a baby with cleft pallet can cause post part um depretion ↑ |
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