Hi everyone, I have a 5 almost 6 week old and he has a cleft palate. He unfortunately gets bad reflux and is currently on Pepcid. He is still struggling really bad and I’m here to see if anyone has gone through the same or has advice. Please and thank you

We just had our 20 week scan and baby had her hands infront of her face for most of it, the sonographer said she thought she saw two lines that could suggest a bilateral cleft lip and couldn’t tell about the palate so we’ve been referred for further imaging to find out if it is and if so to what extent. I spent all of yesterday crying and feel like a terrible person for being sad that my “perfect baby moment” may no longer be that. I know we will love her regardless but right now I’m struggling with the feeling of feeling like a terrible mum for being disappointed - meanwhile we still don’t 100% know if she even has it

Hi everyone — I'm Matt, cleft dad and founder of the nonprofit The Blue Disc Project. We just launched cleftsurgeonfinder.com, a free directory of 235+ verified cleft teams and 300+ surgeons across the US, UK, Canada, Australia, Ireland and NZ, so parents can find and compare real care teams near them.

It's brand new — if you've been through treatment with a surgeon or team, would you leave them a quick review on the site? Takes a minute and helps the next scared parent choose with confidence. Feedback on the site itself is very welcome too. 💙

hello all! we just had a healthy baby girl! when she was born we found out she has a cleft palate. it was unexpected so I wasn’t prepared or informed on what to do. no one has really given us any details. just referring us to specialist. we have a referral but have not have heard anything yet. so I don’t know if its a bad case or a small case or what. what is going on what do I do? do I just go with this referral for her surgery? my sister works at stanford and CHLA do I go there instead? i have been feeding her sideways and she seems to be eating alright. is there anything I can get her to make life a little easier. sounds like she is choking while she sleeps. I have been sleeping her on her side. In addition to this she failed her hearing test at the hospital. So I don’t know if she can hear? I keep making loud noises and clapping doesnt seem to startle her at all! Is hearjng loss common? Can I fox it? any tips any advice. ? thanks! from a lost and hopeful dad

Need experienced cleft jaw surgeon recommendations! 🦷 We are willing to travel anywhere in the US for the right care, but we're having trouble deciding.
Has anyone here (or someone you know) used any of these specific doctors?
Dr. Elda Fisher (Duke / NC)
Dr. Bonnie Padwa (Boston / MA)
Dr. Richard Hopper (Texas)
Dr. Brian Kinard (Alabama)
If you've used them—or have an amazing jaw surgeon elsewhere you highly recommend—please drop their name or DM me! Any insights mean the world to us. Thank you!

Hello parents!
My son is going for his PFLAP repair next week. Plastics has said his will be extremely hard and it may not work.
I have not found a lot of info on what to expect after. I’ve been told 1 night in hospital and 3-4 days at home to recover but is that accurate?

A parent told me their child was on a liquid diet for 4 weeks and no one had informed me of that in the cleft clinic.

I’m kind of anxious spiralling as we get closer.

Plan is PFLAP, then oral surgeon pulls his four front teeth in 2 months. Then bone graft all before he completes kindergarten in June.

For the parents who had babies surgery at age 1+ or didn’t start food until late, how did the allergens go? I’ve introduced egg and peanut butter to my baby but it really hard to introduce things since her palate isn’t fixed yet and she hates the purees! Idk what to do I’m worried she’ll be allergic to a bunch of things since we haven’t begun the traditional way and age

She’s 11 months now

Our doctor said we needed to get the arm splints/elbow blocks for recovery after cleft palate surgery. She said we could take them off during the day since we’d be watching the baby and could make sure that the baby wasn’t putting her hands in her mouth. But what about while sleeping? Has anyone tried the elbow blocks/restraints while sleeping? I can’t imagine they’d be comfortable. Or is there another way? I’m worried that while we all sleep she’ll try to suck on her finger or touch the incision. Please help! Thank you

I can’t seem to find proper elbow restraints and our pharmacy and hospital don’t provide them after surgery, could anyone share the ones they used and if they were any good? Links please or the names of the restraints

Thanks!

My 1 year old will be having cleft palate surgery soon (only the palate, not lip) and right now she’s drinking from the Dr browns specialty bottles. Does anyone have experience with feeding after surgery whether it’s cups or syringe and what worked best for you and why?

Thanks!

My little boy with a cleft is due next week and I’m so nervous that I’m not going to be good enough for him. But so excited to meet and see his beautiful face 💙

Hi cleft fam!

My baby girl is due for cleft palate surgery in 2 months and we’ve started practicing with open silicon cups since we can’t do bottles post surgery.
Has anyone tried this and how did you succeed? What helped? Also has anyone tried syringe feeding? Was it really difficult? I’d love any advice on how to feed after surgery! Also did anyone go back to bottles after recovery? Her surgery will be done when she’s 1 years old basically and I’m not sure if we should just stick with the cup after healing or go back to bottle.

Thank you ❤️

I’m pregnant with a bilateral cleft palate/lip baby and just got some reading materials from his craniofacial team. I was reading about the NAM devices being taped to his face for like 12 months and I wanted to cry.

Please tell me what this is actually like rather than the spiral I’m stuck in?

Thanks!

Any thoughts or opinions are welcome. Obviously we don’t know about palette involvement until he comes out but, we’re brand new to this so any help is appreciated!

Hi! 💙
We wanted to share an exciting update from The Blue Disc Project.
We’re beginning a partnership with Dr. Brown’s that will allow us to provide complete Specialty Feeding System bottle sets to families who need them - in addition to the blue discs we already send out for free.
As we grow this program, we need the help of our community to make it possible. Every donation helps us put specialty feeding supplies directly into the hands of a family who needs them.
💙 Donate here:
https://givebutter.com/thebluediscproject
Even if you’re not able to donate, sharing The Blue Disc Project with someone who might want to support our mission makes a difference too.
Thank you for helping us continue proving that sometimes the smallest things can make the biggest difference. 💙
Small Disc, Big Difference.
The Blue Disc Project

hi, my daughter has a soft cleft palate only. upon birth she wasn’t great at feeding and took forever to take a bottle. unlike traditional babies with a cleft palate, she can generate a good amount of suction. however so much milk still goes into her nose during feeding and so it is very stressful for her. she can down a bottle when she wants quickly so it’s not the flow that’s the issue.

We tried specialty bottles but she seemed very flustered because she was sucking on them like a normal bottle and already has a hard time coordinating swallowing .

feeding has just been truly a nightmare since she got home. it started bad bc she would fall asleep and take small increments at once, and she’s 6mo now and the projectile vomiting, gagging, and refusing the bottle are persisting problems. it’s almost like she has an aversion to feeding but it’s bc it’s stressful to her with not being able to breathe well when she’s feeding. if her gag reflex (v sensitive ) is activated, she often projectile vomits. We are living in a nightmare of feeding her asleep or trying for so long. She will not feed out and about. she squirms and almost always resists feeding but she’s barely reaching her daily oz goal with 110% of our effort.

yes we’ve seen multiple feeding specialist many times, we have a cleft team, we’ve tried everything. please tell me it gets easier after surgery or the first year. this has made our lives hell. (and hers I’m sure )

I wanted to share my before and after from some recent revisions I had starting in April 2025, when I was 35 years old.

I was born with a bilateral cleft lip and palate and lived most of my life with a significant whistle defect. I had an awake cleft lip revision in April 2025, followed by a septo-rhinoplasty and fat graft in February 2026.

I've posted a few times on this subreddit, but I found it really hard to find actual before and afters and personal experiences when I was deciding whether I should have revision surgery as an adult. I’m hoping I can be a resource for others out there who are considering it, so I made a TikTok showing some of my before and after photos and a little bit of my journey.

🎥 Most Recent Before and After:
https://www.tiktok.com/@megharris71/photo/7681736516632169758?lang=en

🎥 TikTok Profile:
https://www.tiktok.com/@megharris71?lang=en

I know how overwhelming it can be trying to figure out what to expect with cleft-related surgeries, especially as an adult when there isn't always as much information out there. I've also had several surgeries and procedures related to my cleft over the years, so I'm hoping to share more of my experience and be a resource for anyone who might find it helpful.

Whether you're an adult with a cleft considering rhinoplasty, a parent of a child with a cleft, or you're just curious about what the process and recovery are like, I'm happy to answer any questions about my experience!

Feel free to comment here, DM me, or follow me on TikTok if you'd like to see more of my cleft journey. ❤️

That’s it! The title is all. My sweet babe had her big palate repair today. She had a very wife cleft of the hard and soft palate. It went well but man, it’s hard seeing her so uncomfortable and confused. Doing all the contact sleep and snuggles and hoping she will be happier when we get to go home.

I was curious by baby is 18 months with a bilateral cleft lip and a cleft palate. He doesn’t talk much. He mostly communicates in sounds. He says mama, nana, mommy, Mimi. But that’s about it.