We just had our 2nd child yesterday and he has a severe unilateral cleft lip and palate. Feeding has been a huge challenge. To make things more stressful, after eating and then being held upright for almost 1.5 hrs. We laid him down and changed his diaper and we’re hoping to get him to nap. He started to look like he was struggling and he wasn’t breathing: he had a small plug of “spit up” blocking his airway which we had to bulb Out.
That was terrifying. I already couldn’t sleep because I was worried he wasn’t breathing all the time. Now this happened. If we were sleeping he would be dead! Are there any very accurate baby monitors that could help give me peace of mind ?
Thanks Tim
Hey! 👋 everyone recently I just joined reddit & i come to know that it's a nice platform to meet people & have online friends. I'm here to make online friends basically I'm little bit of introvert, born with unilateral celft lip and palate. I'm little bit of interested to make female friend basically I didn't have any female friend to talk with because of my cleft I feel insecure now I'm trying something new to get this insecurity rid off from me. So i think let's start with this because of this covid situation here I can't go anywhere. This is nice platform to meet someone online & have great conversation with people. If anyone interested DM me ✌️
May 25, 2021 • 45 min
Cleft lips and palates are common birth defects, but for the kids who have them (and their parents), its no small matter: Years of surgeries, therapy, and possibly lifelong health issues, not to mention the teasing that comes along with looking different.
I want to know if there is anyone who is more or less a recognizable figure, that many people would not have known they were born unconventionally who you really look up to and that give you motivation?
Hi everyone, my name’s Radhika and I'm part of the team at the Centre for Appearance Research at UWE Bristol in the UK. We’re running a research survey on the psychological impact of having a condition that affects your appearance.
We’re particularly looking for participants with conditions present from birth like Cleft Lip and/or Palate as we currently have a higher number of participants who developed an altered appearance in adulthood. So we’d be hugely grateful if you’d please consider taking the survey, which should take around 20 mins.
For more information and to take the survey, please go to: go.uwe.ac.uk/AppearanceImpact
Thank you!
Radhika
PS A colleague may have posted this survey here last year, so if it looks familiar you may have already taken it – apologies for any inconvenience if so.
I was born with a bilateral cleft lip and palate, meaning that during development, an error occurred that resulted in the roof of my mouth and my upper lip not being formed correctly (the specifics of my story can be found here). Ask me anything
Just had surgery where they took tissue from my cheek and pulled it behind my teeth and sewed it to the roof of my mouth, it's just about as bad as it sounds right now lol.
I'm hopeful that this surgery will help fix palate for good. I have to have my cheek stretched across the top of my mouth for a month as it heals. After that I'll have another surgery to remove the bridge between my roof and cheek and my cheek will become my palate.
Thanks for reading any of this, just needed a place to vent. Due to covid-19 I have to spend this next 24 hours away from my wife.
I just want to vent here because sometimes I feel as if hubby can't take my negativity and anxiousness about the pregnancy. When I found out at 20 weeks that my child had a cleft lip I literally thought I was such a failure. We did an amniocentesis and a bunch of blood tests and confirmed that this was an isolated case, there were no genetic findings on either side of the family of cleft and there are no other syndromes associated with cleft lip present. However, there is a study that shows that kids with orafacial cleft tend to also have autism. Now, as a first time mom whose expectations were on raising a child as a beginner would be crying, tantrums, vomit etc. The cleft lip has thrown a different curve. Not only do we need to mind her normal baby challenges but now feeding is different, we also need to be more active in enabling her speech, minding her hearing may affect from improper feeding, needing special bottles and going through surgeries and being in a program until she is 21. I feel as if what else could possibly pile on? Then came across that article and thought that what if there's more? We're incredibly fortunate to have a lot of support but we're also just starting out our careers. I feel as though I've found resolve about the cleft lip and palate. I want to do my best to provide her all she needs including emotional support but what if there are other factors like high functioning autism? I don't mean to offend anybody dealing with this but I just feel unprepared with other potential things attached to her cleft situation. Of course, I would do anything for my little one I guess I just need some reassurance or some tough love I'm not sure.All in all, I just feel sad that my future daughter has to go through all of this and I worry I may not be good enough as I feel so clueless right now at 32 weeks on how I'm going to go about supporting her.
This is probably a very weird question, but like isn't it very limiting to have a cleft lip (and/or palate) when kissing others & making out? Because the upper lip is so stiff or numb and can't really move or pout to the extent that a normal lip would.
Is this a common problem for people with a cleft lip? Thankful for other tips and insights.
We just had our anatomy scan today at 21+1 and the tech suspects a cleft lip/palate on Baby B. I’ll have a follow up appointment with a MFM to confirm. While we’ve mostly come to terms with it and are ready to pull ourselves together and learn everything there is to learn to help this sweet baby, I’m still struggling with a bit of anxiety and fear of unknown. I’m a FTM, having twins due in November during a pandemic and now realizing that one will need special medical attention and surgeries. Has anyone had any similar experiences? I’m concerned about balancing pumping for one baby and (hopefully) nursing their twin. I know things could be so, so worse and this is a relatively small problem to have but I would just love to hear from other multiples parents who have been through something like this.
TL;DR Lay's campaigns for Operation Smile but does not represent people with cleft lips/palates within their campaign even though the campaign is supposed to benefit those with cleft lips/palates. Is anyone as frustrated as I am?
I don't know if this is the most appropriate place for this conversation but I don't really know where else to turn.
For the past 3 years, Lay's has partnered with Operation Smile to raise money for the organization (which I think is awesome and super important; because of my cleft lip journey, my family has donated to Operation Smile every year). I love that Lays is partnering with Operation Smile and I'm thankful for their support of the organization, HOWEVER I've been feeling pretty dejected that, within the campaign's 3rd year, there's only been ONE person with a cleft lip/palate represented on the chip bags...
I am a college educator and even asked a group of my students if they knew what Operation Smile was just based on the Lay's bags and not one of them even thought about cleft lips/palates. I've reached out to Lay's in the past to talk about their lack of representation of those with cleft lips/palates and have never heard back.
While their representation has grown to include people of other backgrounds over the past few years, only having ONE person with a cleft lip/palate represented when the goal of the campaign is to raise money for an organization who's mission is to provide surgeries to children with cleft lips/palates in underserved/underprivileged countries and communities feels like a slap in the face.
It's been brought to my attention that it's a "marketing decision" based on the perceived "attractiveness" of the smiles on the bags... but I personally think "marketing" is a BS excuse in this instance.
I plan to reach out to Lay's again with the hopes of starting a conversation to express my support of their partnership with Operation Smile while also expressing my concern that they're not bringing awareness to the cause they're supporting and they're doing the organization a disservice by not using this as an opportunity to represent the population they're serving.
I decided to post here to see if any others felt the same way or had a similar feeling of frustration as I did. Maybe I'm being a little crazy, but I think that representation is so important. I'll be sure to share updates if and when I reach out to Lay's.
Just wanna help kids with Cleft lips and palates with the whole thing. Helping out with the fear of surgery, after surgery, since I’ve dealt with it myself. Idk I feel like I could really really help some kids, I just don’t know what opportunities there are. Does anyone have any ideas, or has anyone ever thought this before?
Cleft has really made my social life miserable, no matter how hard I try to be friendly, there's always that one limiting factor That affects my social skills. Its hard to have an intimate relationship, its hard to just talk to people without those whispers in my head that they might laugh or feel off when they hear my voice.
Its hard that i feel apologetic to someone who cant understand me, even though i know to myself that Its not my fault why i have this condition.
Im tired of being too laid back, even though i want to go out there, my cleft wont let me. You could say that i am blaming my condition for this, yes I am, half of my lifetime where i was ridiculed for simply talking, how can i be extroverted when it was implanted to my brain that im not as normal as anybody else?
Hi, my name is Fabio, I'm a researcher at the Centre for Appearance Research at UWE Bristol, UK.
We've created a prototype mobile app called ACT It Out for **UK-**based adults who have any condition that affects your appearance, including cleft lip and/or palate. Mores specifically, it's for people who are going through any psychological / social difficulties related to appearance.
We're piloting ACT It Out, and would really like more participants who were born with a cleft to try the app to make sure the course best meets the specific challenges of the condition.
For more info and to register interest, go to go.uwe.ac.uk/ACTItOutInterest
Or watch this short explainer video featuring one of our co-designers, Kenny, who was born with a cleft lip and palate.
Thank you!
i’m just curious bc for me personally i feel like it does. i feel like when i breath in (thru my nose at least) not all the air gets to my lungs. its almost like it escapes into my mouth bc of my palate not being able to be closed all the way (meaning i have a hole in the back of my throat).
Yeah, so I'm a person who has got a cleft lip; was a great source of "entertainment" for my peers, nothing really matters now though
