Hi everyone! I was born with a cleft lip and palate, and am currently in school to be a speech pathologist. I am hoping to specialize in working with clefts, but it is so hard to find information about how to do this. I’m curious what everyone’s experiences with speech therapy were and what setting you saw your slp at? Was it just a local school or clinical slp or was it someone who specialize in clefts? I needed little to no therapy, but when I did meet with them mine was always in the hospital with the rest of my team, but I’m curious if anyone else had a different experience.

Have an wonderful day!

Can I ask if it is normal for the child to vomit after 2 weeks of the cleft palate surgery?

If anyone knows anything, please tell me..i'm very worried!

Hello I am an 18 year old orphan from Estonia, my goal here is to share my story and to give you guys hope.

It all started when I was 1 my parents got their parental rights removed due to reasons of child neglect and some other very serious stuff, growing up with no parents has left an life long impact on me as an person, I got adopted back in 2009but unfortunately a year later cancer took my adoptee mom when I was 4 😭 She was the nicest person I ever knew still remember the days where if I made an mistake I never got punished but instead it got turned into an lesson on what not to do and how to grow from that experience!

In the orphanage I was basically always alone the wierd one in the bunch, I have an brother and an sister, my brother and me were in the same orphanage but we never were on the same page we always fought and now recently when he started drinking and smoking we have had massive fights ever sense, the reason for me not wanting him to smoke and drink is the same as the reason for us ending up there but he doesn't believe that and as an matter of fact blames me for ending up in the orphanage, I am the reason in his eyes that his life got "ruined" Maybe I was but that is not the conclusion I have come myself.

I haven't used reddit before but thought to give it an try maybe.

My 3 month old daughter got her surgery date for her cleft lip revision. She will have it on the 16th of may. I'm excited for her to get her lip fixed even though I'm going to miss her cleft smile. I was wondering if anyone could give me some tips on how to make her more comfortable during the healing process and how to make sure she gets everything she need. This is my first kid having a surgery and I just want to make it as easy on her as possible.

I was born with a bilateral cleft lip and palate and my whole life I never was usually never been able to breath through my nose. It's a pain. I was wondering if anyone else also has this AND I just found out that someone reversed their pharyngeal-flap sugery to breath better (supposedly) and was wondering if anyone who hasn't that that surgery or anyone who reversed that surgery can breath through there nose

My cleft palate reopened in the front (hard palate). And it always leaks and runs. But when I’m eating foods and liquids more leaks out. I have an appliance but it only helps so much. Because food goes up there, i always have infections in that nose and it smells terrible. It’s one of my greatest insecurities and im wondering if anyone else can relate

This summer I'll will get a nose surgery to fix my deviated septum and appearance, are there any tips you found for the recovery?

how do i deal with inferiority complex?

Hi, Im from the philippines, im 17 yo male. so this all started back when i was 15. whenever i try to talk to people, i feel like i am inferior because i dont know what to say during conversations. ive been dealing with depression and social anxiety right now. because last year, 2023. when our class started. i decided to become better socially to the point that i pretented and faked my personality. everytime when i am with people i try my best to be outgoing but i just can't. the longer i am with them( "friends"), the more the "i dont feel genuine connection with them" feeling starts hitting me.

i just went through a heartbreak but i already moved on from that. I faked everything even my personality and way of talking in order to pull her.that effected me somehow, it changed my sense of reality and disorted it. as of now i don't if i am still at my right sense. I dont know who i am anymore.

right now i stteped back from who i was before(shy? has low self esteem? bad social skills?).

the hard part is I feel like i dont know how to get along with others. i dont know how to talk girls too.

i feel inferior everytime. even with my family, im scared to talk to them because i dont know what to say.

i see myself as an immature, socially unintelligent, and emotionally unintelligent one. when i am with people right now. i am dwelled with thoughts and anxious sometimes

Its not painful, just fuckin annoying.

I’m really see conscious about these two things and was wondering what you all have.

My maternal grandmother had a cleft palate and lip, and my boyfriend’s dad has a cleft lip (I don’t remember if he had palate too). My boyfriend doesn’t have a cleft but his teeth came out pretty weirdly, and my mom and I don’t have clefts but we both have pretty asymmetrical faces. I don’t know if that’s relevant, but given that it hasn’t been determined to be from a specific allele or anything and is a combination of factors, i think those things exhibit that we have some but not all of the things needed to create a cleft. A lot of the posts here say “well, especially if you and your partner don’t both have it in your family, it’s unlikely your kids will have it”. But we both do have it in our family. Does that mean anything?

(I mostly just ask because I want more excuses to give my mom on why it’s not a good idea for us to have biological kids lol)

Can you wear soft palate obturator while iyour teeth are in metal braces? Hmm

I was born with unilateral cleft lip and palate. I am undergoing my 2nd orthodontist treatment. I just want to share my cool lower teeth panel. The screws are called TADS placed to move my lower teeth back. My upper teeth is still my huge insecurity so can't show but can't wait to share my final results in 1 year 🤣

Was inspired by previous post from another reddditor

Hey guys! I have a unilateral cleft lip & have been struggling with intense drooling while I am asleep for most of my life. I came across an article linking cleft lips with a higher chance of cavities due to the pH balance of our saliva being abnormal. I have had so many cavities (and just overall dental issues) throughout my life so maybe making sure my mouth stays closed while I sleep will help? I’m probably completely grasping at straws here but idk I just want to prevent as many dental issues as possible lol.

Recently, I was looking into buying tape however I believe it may just end up irritating my scar. Does anyone have any experience with using a mouthguard to prevent drooling? If so, what brand/ type/ style do you like? Or maybe you have another way to keep your mouth closed while you sleep? I have extra gum tissue between my front teeth & top lip that becomes easily irritated by brushing so I also worry about that with a mouthguard.

I appreciate any advice! :)

hii so we were just chilling on my bed when he noticed my nose my nose has been made a huge insecurity of mine bc the uneven nostrils has been pointed out by literally everyone in my life. i told him i was born with a cleft lip which he was understanding of and said he wasn’t trying to make me insecure but still, i hate how even after i got my recent nose job from last summer im still unhappy with my nose. :( what also sucks is my teeth which are fucked up to i shouldn’t be too hard on myself but it is hard

also the image is a scan of my teeth. my right side is clearly more fucked because of the cleft. life sucksss :/

His bilateral cleft lip was closed mid-January. I think they did a really good job. 🥰

Heyo, I'm 29 years old, prepping for a bone graft. Hip to upper gums. Four front teeth extracted a month ago. They'll be out for a year or so until implants can go in. It's hard emotionally to not have my front teeth. I'm usually pretty strong about it all but sometimes I get hit by these waves of emotions that I feel like are from when I was a kid... from the constant and overhwhelming experiences that were unwelcome and unannounced and unconsented hands and metal and pain in my mouth. I didn't express many emotions when I was little, barely cried. Repressed that shit. Felt ugly. Boys affirmed that feeling. Now I feel different for a large part thankfully, and have done a lot of inner healing, also have a loving parter who isn't fazed by this stuff which is great. And still, that doesn't get at my own inner, deep feelings, especially as they relate to body comfort. My body feels like chronically hypervigilant. I meditate a lot, do yoga, stay active, all that helps, and in a big way I'm well-resourced and doing well, but also I feel like stones are in my chest and my shoulders have legit never relaxed. I'm pretty over ambitious and usually working too hard because I'm likely avoiding all this stuff bottled inside. How do I learn to relax? I'm reading The Body Keeps The Score about trauma right now. And looking for other resources-- maybe EMDR-- for support preparing and healing from the bone graft on May 1. Thoughts, shared experiences, and resources welcome and appreciated. Peace

Hey Everyone,

My son had palate repair exactly one week ago today. I’ve noticed he seems way more sleepy yesterday and today. He just wants to lay in our laps and will keep dozing off if we let him. He doesn’t have a fever or anything and doesn’t seem lethargic or out of it when he’s actually awake and playing. Is this normal? We see his doctor tomorrow and I will bring it up then but wanted to see if this was anyone else’s experience?

last night i was walking my dog and we bumped to 4 kids playing outside (they're 11-14 i think) they sat on the gutter across us and my dog was acting up so we stopped, my back facing them. i heard the kids snickering around and calling me names, not directly, but very loudly and i could see them pointing at me at my peripheral vision til we contiued walking. we stumbled upon them again but this time closer, i literally heard one of the kids say "there she is" and they all laughed.

all of the confidence i mustered up the past year crushed, just like that. i know i shouldn't let them get to me and it's easy to tell myself to not mind bullies, but that reminded me of when i was a kid going through the same thing over and over again so it hurt. it may not seem that much, but all i could think of was, "do i really have to go through that my whole life?" it's just so scarring. the world needs more cleft awareness. i was on the verge of tears all the way home.

Hi everyone!

My name is Leona Rabiei, and I am conducting a research study as a Nutrition graduate student at Simmons University. The study is titled "Navigating Challenges: A Comprehensive Review of Feeding Practices and Socio-economic Factors Influencing Parental Psychological Distress in Cleft Lip and Palate Families."

Our research focuses on the relationship between feeding practices, socioeconomic factors, and psychological distress among parents of children with cleft lip and palate. We aim to provide insights that could enhance support services for families experiencing similar challenges.

We are inviting parents/caregivers of children with cleft lip and palate to participate in our 10-15 minute online survey, which will help us gather meaningful data on this important topic. Please note that participants must be 18 years of age or older to take the survey.

As a gesture of our gratitude, survey participants will have the option to enter a raffle at the end of the survey for a chance to win a $50 electronic gift card.

If you have any questions or would like more information, please don't hesitate to contact me at Leona.rabiei@simmons.edu or my faculty advisor Dr. Kathrina Prelack at Kathrina.prelack@simmons.edu.

Thank you for your attention and support!

https://qualtricsxmmjrr22lhj.qualtrics.com/jfe/form/SV_795v9RGqZ8HA71I?fbclid=IwAR2FQ24x_wLYIa0VPn05tN6u93pCGswiENtt9FGvNYy20xEwDT6caSuJAB0

https://preview.redd.it/bednhu27jjqc1.png?width=940&format=png&auto=webp&s=7f9972f32f83e28627c934728747f29c879a6c2c

My 3 month old daughter is getting close to getting her surgery for her cleft lip. They want to use a nasal elevator beforehand so there is more skin to work with. I would like to know any tips or advice on how to make this comfortable for her as I'm sure she will not like it. Also any tips on how to make her more comfortable after she has the lip surgery?

I'm 30, and I can count on my two uvulas how many.

1 was a girl in my middle school, she apparently clocked my scar, but I didn't notice hers until junior year of high school.

The second was a very young kid, maybe 4 or 5 in the grocery store. I noticed her scar, and stopped and talked with her and her dad for a bit. She and I were both pumped.

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I just find it crazy that it's 1 in 2000 of us with cleft palates. I must just never notice them?

Hi! I’m 25 and was born with a pretty minor cleft lip/palate (no speech or other craniofacial issues). When I was around 10, I had a fat graft lip revision to even out what was there. It looked great for a bit until the fat graft ballooned to 3x its original size (shoutout to puberty). This was the most noticeable part of my cleft lip. I had a revision at 17 to fix it and I have been super happy with it. However I started a new antidepressant a year ago and it’s made me gain a lot of weight. I really didn’t mind it at first (I’d rather have my mental health than be skinny). But I started to notice that the fat graft has ballooned again and it’s really messing with my self esteem in a way that I haven’t dealt with before. My face looks completely different than it did a year or two ago, and worse than it did even before the revision at 17. My lip feels like it has these giant cells (scar tissue?) that pucker where the cells stop and start- that wasn’t there before. I’ve been trying to massage them to stop so much puckering but it doesn’t seem to be helping. I’ve always had generally good self esteem but this is really getting to me. Tonight I decided to cancel my bar hopping plans with my friends because I just feel so uncomfortable in my skin and didn’t want to be perceived. I want to pursue another revision but I’m getting other pressing (unrelated) surgeries in the next few years and want to learn some self acceptance. I also don’t really have a guarantee of losing the weight I gained if I go off my antidepressant. I would love to hear from people dealing with changes to their cleft appearance over time or anyone’s experiences with self acceptance.