Here’s a free collection of resources about Cleft Lip & Palate.
Cleft Lip & Palate Survey
We’re surveying people about their experiences with Cleft Lip & Palate. Here will be a collection of their responses.
*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!
*Response format = Answer (Name, Age)
Cleft Lip & Palate Facts
What are some interesting facts about Cleft Lip & Palate?
- They’re sorta rare. (Hannah, 20 years old)
- You look different. (Nasiba, 26 years old)
- Well I have the van der woude syndrome in my family so on my side we all had lip pits. (Hailey, 28 years old)
- Looking different. (Bhuwan, 31 years old)
- Some cleft lip and palate repairs, specifically the flap repair can cause obstructive sleep apnea. (Desiree, 34 years old)
Cleft Lip & Palate Difficulties
What are the hardest aspects of living with Cleft Lip & Palate?
- Speech problems & looking different. (Hannah, 20 years old)
- Speech isn’t clear. (Nasiba, 26 years old)
- I found speech my hardest obstacle, certain words I couldn’t pronounce and would get laughed at etc. I ended up laughing about it, but deep down I was subconscious. My daughter has a cleft lip and palate and I just hope she doesn’t get bullied due to her appearance. I had it with my speech as I only have a cleft palate but I also had a friend with a cleft lip that got bullied bad due to it being noticable. The work they do nowadays though I hope it’s not the case for her. (Hailey, 28 years old)
- Having sinus problems, multiple painful surgeries, and people not taking the time to get to know you before making a judgement. (Desiree, 34 years old)
- Other people’s ignorance/attitude. (Rebecca, 36 years old)
- Bullying and people looking at you like you are a freak. (Anonymous, 40 years old)
- Other folks accepting it and numerous surgical procedures. (Jennifer, 43 years old)
- I’d definitely say my primary and secondary school years were hardest because I was teased for having a cleft. However, I found at around fifteen I decided to accept myself and found life so much easier. I gained confidence and from then on I’ve viewed my cleft as a positive thing. It’s part of me and it’s contributed to me being the person I’ve become and I’m proud of my journey and my cleft. (Louise, 44 years old)
- My palate has opened slightly over the years even though it was closed twice. This makes me more susceptible to sinus infections and sometimes affects my speech. When I was young the bullying was the hardest aspect. (Stefanie, 58 years old)
Cleft Lip & Palate Advice
What encouragement/advice can you give others who have Cleft Lip & Palate?
- Don’t care about what others think. (Hannah, 20 years old)
Keep going and never give up. (Nasiba, 26 years old)
- I found I did get away with things by laughing it off due to my speech and I would make a joke about it. I then found by just explaining I’ve got a cleft palate and that some words are harder to pronounce and then ask how to say it again and would repeat and do it. Once I did that it’s actually been better for my confidence. I would just say don’t let it defy you. You are so capable of doing anything you put you’re 100% into. (Hailey, 28 years old)
- Things may not get easier but you will get stronger! (Desiree, 34 years old)
- Don’t let other people put you down, if you want something you will get it! Having a cleft does not have to stop you doing anything! (Rebecca, 36 years old)
- Be strong. (Anonymous, 40 years old)
- We are rare, brave and sensitive individuals. Some of the strongest and bravest, kindest and most caring. You are not alone – look for us and you will find us. (Jennifer, 43 years old)
- Love yourself and your cleft lip and palate. (Louise, 44 years old)
- Do not let it define you and you can achieve everything you set out to do. I earned my Ed.D. and served as a teacher and middle school principal and college professor. None of my three kids have clefts. (Stefanie, 58 years old)
Cleft Lip & Palate Treatments
What’s been your experience with treatments (medication, surgery, etc.)?
- I had two different surgeries to repair my cleft and ear tubes placed four times due to the cleft. (Hannah, 20 years old)
Sometimes it’s hard because you miss out on your life, because you’re always at the hospital. (Nasiba, 26 years old)
- I had all my surgery when I was younger and I can’t remember any of it. I do remember the frustration with speech but got so much help with speech and language it did help. I’ve still got a small hole in my palate I could get closed but I am completely fine the way I am now. My daughter, she has had two operations and got a few more as she has a complete cleft lip and incomplete cleft palate and complete cleft palate and gum notch. So she will need to get a bone graft when she has all her adult teeth come through. I know her journey is much more intense than my own. I’m just glad she has the option to get as much work and help she wants. The cleft team are amazing and so much support. (Hailey, 28 years old)
- The good being meeting others with facial deformities while waiting for surgery, the nurses and doctors who made me go into the medical field. The bad, has been tough, I’ve had just about every complication you can have. Such as, two bone graphs cause (my body rejected the first), infection, and cholesteotoma in my ear. (Desiree, 34 years old)
- A child surgery was lonely and last op was when I was 22 and the nurses didn’t understand what was required. (Rebecca, 36 years old)
- Very unhappy with the treatment I recieved, now at 40 I look at people on this clappa site and they look amazing. I’m too scared to go to GP to ask for anything else, as they are not the nicest and I think I’ll just get turned away, So I just hide behind a closed door. (Anonymous, 40 years old)
- I had a number of surgeries as a baby and child. My last operation was when I was 14. I still have visible scars and a hole in my palate. I’m 44 now with three sons of my own. I’m not interested in more treatment. I’m happy in myself totally. (Louise, 44 years old)
- My surgeries started when I was a baby and continued until about 12 years ago. When I was a teenager they fixed the muscle in my lip so both sides go up at the same time now. During the last surgery they did a bone graft to close my palate which was not done in 1960. I found it very difficult to find help though once I was an adult. (Stefanie, 58 years old)
Cleft Lip & Palate Recommendations
Anything you’d recommend for someone with Cleft Lip & Palate?
- Just to be strong and not care about what anyone thinks. (Hannah, 20 years old)
Speak your mind. (Nasiba, 26 years old)
- Learn to love yourself and not care of anyone else’s opinion. You can achieve anything and you’re amazing no matter what anyone else says. (Hailey, 28 years old)
- Don’t strive for perfection because you’ll learn the hard way it doesn’t exist. It’s okay to look different and in fact embrace it and life will open more opportunities to meet wonderful people and experience wonderful things. (Desiree, 34 years old)
- Fight. (Anonymous, 40 years old)
- Embrace yourself and don’t let other people’s opinions get you down. (Louise, 44 years old)
Cleft Lip & Palate Resources
What specific resources have you found most helpful?
- Doctors. (Hannah, 20 years old)
- To be honest I never knew what I had until last year and done my own research. (Nasiba, 26 years old)
- Speech and language. Dentist and the surgeon. (Hailey, 28 years old)
- Being an advocate for others with cleft lip and palate. I enjoy having a pen pal and learning I’m not alone. (Desiree, 34 years old)
- Clapa website. (Rebecca, 36 years old)
- I just found this clappa Facebook site in the last few months and think it’s great. (Anonymous, 40 years old)
- Clapa for sure on the website and Facebook. I love reading about other people’s journeys young and old and enjoy seeing how much support we all have for one another even though we’ve never met. (Louise, 44 years old)
- I went to a pediatric ENT who helped me a lot and was able to send me for tests to verify liquids going through my nose. Calling doctors who work with Smile Train can help you find an orthodontist and surgeon if you are an adult still in need of treatment. (Stefanie, 58 years old)
Cleft Lip & Palate Stories
Share an experience you’ve had related to living with Cleft Lip & Palate.
The number one was feeling ugly, especially in my teenage years. (Nasiba, 26 years old)
- I have bad hearing due to my cleft and really bad earaches when I’m full of the cold. (Hailey, 28 years old)
- In second grade I wrote a letter to my teacher asking if I could stand up in front of the class to explain what I was born with and what I had went through because I thought if they knew then maybe I wouldn’t be bullied as much. I got an amazing response from my peers and received an award for bravery from my school. The best was it boosted my self confidence and I learned that people were afraid of what they didn’t know. (Desiree, 34 years old)
- Where to begin… (Jennifer, 43 years old)
- I had a wonderful Consultant Mr Joss at the Norfolk and Norwich Hospital from birth till I was 14. Mr Joss was a wonderful man and I had total confidence in him – he explained all about my next op under a new consultant and I was going to have my palate closed. However, when I met the new consultant all I can remember is him saying some of my teeth could fall out. That was it for me. I’d lived with a hole in the roof of my mouth all my life. I could manage that but not losing my teeth at 13! I didn’t go back to the hospital until I was 40. (Louise, 44 years old)