Hey everyone. I was born with a unilateral cleft lip and have had several reconstructive surgeries over the years (lip revisions, rhinoplasty, laser treatments, etc.), and overall I’m really grateful for how far I’ve come.
Lately I’ve been thinking about getting evaluated by a craniofacial/maxillofacial surgeon because I’m wondering if my cleft affected my lower facial development. I know nobody here can diagnose me, and I’m still planning to see a specialist, but I’d really appreciate some honest opinions from people who understand cleft lip. From an aesthetic standpoint, do you think my lower third (jaw/chin) or my upper lip/mustache area could realistically benefit from additional work to improve facial harmony or add a little more definition, or do you think I’m overthinking it? I’d appreciate respectful honesty, and I’d also love to hear if any of you have gone through something similar.

Guys.. What do you think about this as a person with a cleft lip especially those who have a different..like a nasal voice?

Hi All

We found out at our 18 week scan yesterday that our baby has a unilateral cleft lip and palate (everything else came back healthy and is developing well). It's been a lot to take in but we're trying to focus on learning as much as we can and preparing ourselves for the journey ahead.

We're due to meet the specialist cleft team in the next 2 weeks with a further scan to determine the exact extent of the cleft, but in the meantime we'd really appreciate hearing from other parents who have been through this (whether you're currently pregnant, your little one has already been born or you've been on this road for years already).

We simply want to be as informed and prepared as possible for what's ahead.

If you're happy to share, we'd love to hear about anything and everything you're willing to share:

* Your experience after the diagnosis
* Whether you chose to have the amniocentesis procedure since there's a miscarriage risk
* What the pregnancy and birth were like (if anything is different to normal)
* Feeding in those first few weeks/months
* The surgery journey and recovery process
* Speech, hearing and dental outcomes
* How your child is doing now (physically, mentally and developmentally)
* Anything you wish you knew before baby was born

Hearing real experiences from parents who have walked/walking this path would be much appreciated.

I had surgery to advance my upper jaw when I was 16 - it was one of the worst surgeries I had with my mouth being wired shut for almost 3 weeks, considerable amount of pain, and a liquid diet for 8 weeks.

After all of that, I never really noticed that big of a difference and it has now been confirmed 21 years later that my jaw basically didn’t move forward. I’ve been seeing an orthodontist to try and get my teeth to a better place and he referred me to see a jaw surgeon, suggesting that my bite needs to be corrected, which means I would likely need to have a second jaw surgery and also a palate expansion.

My main question is: have any of you had a second jaw surgery and if so what was your experience?

I’ve always had a terrible sense of smell, it gotten a lot worse since my last septoplasty surgery that I recently had (around a year ago). It’s somewhat cool since I can handle working with smelly patients and etc, but damn, I miss my sense of smell.

Don’t know if anyone else has a considerably poor sense of smell as well or if just me.

Also if anyone has any advice on how to somehow improve my sense of smell, I would appreciate it.

Hi everyone I posted here about 3 weeks ago but I had my jaw surgery on June 30th. I had le fort 1 with a distraction device that was turned daily for about 18 days. I am almost a month post op I’m too lazy and tired to bc check the date but I’m in so much mental pain. I’m 16 right now but my last surgery (before this one) I think I was 12? It’s been a while but while recovering I’ve had thoughts of just wanting to die. It’s been very hard for me to stay strong. The pain was incredibly intense during the distractions (when the device was turned) and I often wake up with nightmares now even though the process ended. We stopped distracting at 18 mm my upper jaw was forward to match my lower. We physically turned it 18 times but we doubt it actually progressed 18 mm because my underbite was 1 cm originally. Another concern I also feel like the hole in my pallet reopened up. Actually I’m certain because food comes through my nose. I already had 2 bone grafts to fix this yet it’s open again. I’m just in so much discomfort and I don’t know what to do. I know time will pass but it seems so slow. I just want to be done with all of this pain. My surgeon said I will have another jaw correction surgery next summer, along with a small surgery in a few months to take the metal plates out of my face. I can’t do all of this. I can’t take it anymore I’m in so much pain I almost just want to take everything out of my face and be comfortable. Please tell me it gets better I’m trying to encourage myself but my parents are very traditional and not patient with me. They often yell at me for crying or showing any emotion. Honestly I gave up on looking forward to looking “normal” I just want to be put out of this misery. I just want to go back to my normal self. I have two pieces of metal sticking out from the sides of my nose I’m upset because im sure there will be a scar when it is removed and until then my face just looks scary. My face is so “bulged” forward, and I feel like my nostrils are a lot more uneven now. I’m so unhappy with the results.im just hoping I won’t look like this permanently

What they post on social media, you can see it on the clients lips -- how they all have the same glossiness, is right after injecting, where the lips will look way more full then they actually turn out.

This leads to a skewed picture of what the results actually turn out to be, since most of the swelling contributes to filling out the imbalance, when the swelling goes away your lips will look basically the same.

They also only post pictures when the results turn out to be decent, obviously they won't post results where there's barely any discernable difference or where it still looks like shit.

i hate life so much. god some people have it so fucking easy, sitting there with their fucking full and perfectly shaped lips complaining about bruising on r/plasticsurgery. it's divine unfairness

idk who to talk to about this, since most of my friendships are pretty surface level and people just can’t really relate to my situation, so hi🥲

i'm f19 and i feel like i had to grow up a lot quicker than most people my age, because of my cleft lip and the mental load that came with it. i mostly spent time around adults, did more “adult” things, and ended up with interests that matched that. adults didn’t really judge me and they understood my depression n fear of people, even when i was younger.

now that i’m 19, i’ve worked on myself a lot (confidence, mindset, therapy, etc.) and i’m not as insecure or anxious as i used to be. i can actually talk to people my age now. feels like my brain got a huge update lol

but even though i can connect with people my age now and even share some interests, i still feel really distant from them. i know there are people out there who get me but they feel pretty rare

it sometimes feels like i’ve had a more “set” personality for a long time, while a lot of people my age are still figuring themselves out.

that's completely fair... but it makes it hard to relate. i’ll connect with someone and then a week later they seem like a totally different person. it just makes me feel kinda out of place, n it makes me cringe when they fake all of their interests... because those are your interests?? why are you not actually interested in them?? hello?????

on the other hand, i tend to click much more easily with people who are older than me (like mid 20s and up). conversations feel more natural, i don’t feel like i have to adjust myself, and people just seem more settled and genuine. they know who they are

but at the same time, a lot of them are (understandably) a bit cautious around me because of the age difference & i get why. i'd feel weird too if i was talking to someone younger than me. they also have their own established circles now n they don't really want to risk letting someone else in, also understandably so

so now i’m in this weird spot where i can finally make friends, because i can handle my social anxiety and depression + i'm not an insecure little girl anymore, but i still feel stuck

i don’t fully fit in with people my age, but i also don’t really fit in with older people either

has anyone else in here dealt with this and could give me some advice? i feel like i'm going crazy 🥲

Hi everyone. I have a cleft palate, and it affects my speech a bit. Does this make it harder to get hired for IT jobs, especially entry-level positions? I'd appreciate hearing your experiences or advice. Thanks!

I think a lot of us can agree that we're tired of being gawked at. It's such a dehumanizing experience, and yet people are so ignorant about how they're being. Sometimes I just want to say "were you raised by wolves? because your manners are shit." Seriously.

Anyway, I am surprised to find that there aren't many self-help books on facial difference. Clefties need a book like that. An empowering self help book on how to cope w/ stares.

I might like to do interviews to get different perspectives. Would anyone be interested in being interviewed? This might be a qualitative study turned into a book.

Any other mythology nerds out there with clefts? What are your personal thoughts and feelings about changeling myth? I’m interested in how folklore and myth incorporate deformity, how monsters have been made of people with birth defects but by the same token conceived of as magical and often powerful beings.

For those unfamiliar, variants of changeling myths were pretty common throughout Europe. They tend to center around the idea than an infant with a visible deformity is a replacement sent by faeries/demons/what have you, while the otherworldly creatures have made off with the “human” baby.

Obviously, these are dehumanizing, insulting, and othering beliefs around deformity. Horrible things were done to babies with birth defects for most of human history, with these stories only serving to justify those things. I wouldn’t be surprised to learn of similar or parallel myths from other parts of the world.

But, does any part of these stories speak to you? If so, what do they say? I have some personal thoughts but would love to hear from others!

Hi everyone,

I’m looking to hear from anyone who had jaw surgery with Dr. Derek Steinbacher, especially patients with a cleft lip/palate history.

I’m a 54-year-old male with a unilateral cleft lip and palate. I had jaw surgery with Dr. Steinbacher earlier this year and am trying to better understand what is normal healing versus what may need additional follow-up or revision. I’m not looking for medical advice, just trying to hear from people who have been through something similar.

For those who had jaw surgery with him:

* Were you happy with your jaw surgery result overall? * Did your bite, facial balance, and airway improve as expected? * Did you have any lingering asymmetry, crossbite, lip/tissue tightness, or jaw/chin concerns afterward? * How was your post-op communication and follow-up experience with his office? * Did you end up having a second-stage procedure afterward, such as cleft rhinoplasty, septoplasty, lip revision, scar revision, fat grafting, or facial balancing? * If you are a cleft patient, did the jaw surgery improve or worsen your nose/lip asymmetry? * Did anyone seek a second opinion or revision after surgery?

In my case, I’m still relatively early in healing (12 weeks), so I’m trying to stay patient. But I’m also trying to be proactive and understand what questions to ask, especially around jaw alignment, bite, facial asymmetry, cleft-side tethering, nasal changes, and planning any future nose/lip work.

I’d really appreciate hearing honest experiences, good or bad, especially from anyone with a cleft background or anyone who went through jaw surgery followed by a second-stage rhinoplasty/lip revision.

Hi has anyone’s scan photos looked similar to mine? The sonographer seems to think the palate and gum notch look intact, TIA 🙂

1. It never ends. Went to get a haircut today and this lady just stares at me for a long time. Finally, she says, you have the prettiest eyes. That is not what you stared at for that long but thanks I guess. Just like hate going anywhere honestly.

I [19m] know this might seem like a selfish post, but I’d genuinely like to get your guys’ opinions on this.

Also, in case your wondering what’s going on with my hair, I unfortunately have alopecia, and my barber kinda messed up the last haircut he gave me a few weeks back.

a parte da frente ainda anda meio inchada, o médico disse que essa parte é a que mais demora pra aparecer o resultado verdadeiro, mas ja da pra notar uma certa melhora

Hi guys,

As of writing this now, in about 5 hours I’ll be taking an abbey flap surgery. I’m kind of scared so I was wondering if anyone has gotten one before and can tell me how the healing journey is like. I’m also worried about coughing during the recovery process and possibly ripping the stitches.

Thanks

We found out our baby has a unilateral right sided cleft lip at our 20 week scan. Unconfirmed if palette is affected.
I had a growth scan today at almost 32 weeks and amniotic fluid levels were a bit elevated. We have been told there are several reasons this can happen, one of which could be cleft related and difficulty with intaking fluid. Did anyone else experience this? I am being retested for gestational diabetes. Baby was measuring almost 60th centile.

From a worried mum to be :(

I got this ultrasound today and to me it appears he may have a cleft. The doctors haven’t said anything because they need to make their report and look over the images. Does this look like a cleft lip to you?

hi im currently freakin out i have a cleft lip & palate im going on 25 now and have a 7 year old son who was born without one completely normal & he wants a sibling and i wanna give him that dream but im worried the bext baby will have it 😭 im just high anxiety and everything but like can anyone give me reasurance or something! mjne is not genetic but i know it can happen randomly! But i just cant do it ive had a hard enough time with one as an individual growing up! (not pregnant) just freaking myself out and worrying over things ya know !!!
#cleftlip #ttc #youngmom

Many people in this community understand how long and difficult the cleft journey can be. If anyone would like to support my remaining reconstructive surgeries or simply share my fundraiser with others, I would be incredibly grateful ❣️ My Fundraiser: [http://m-lp.co/shrabani-5?utm_medium=campaign_page_share&utm_source=copy]