The Cleft Chronicles

Anonymous asked: Thanks, that helped a lot. That's what they told me. It would be hard to fix. I never had a surgery for anything. Do you have a speece impairment also.

You’re welcome :)

I did have a speech impediment when I was younger as air flow was going out my nose and fistula and I couldn’t control it. So I was very nasal and very pitchy as a child (I’ve watched home videos and I can hardly understand what I’m saying sometimes because consonants were not a thing I did well, not enough air flow control) but speech therapy and the following surgeries helped me. Regarding the fistula, it did give me trouble with air flow and liquids going up it and such. I’ve had more speech therapy since the fistula was closed and it is still difficult for me to pronounce hard consonants clearly (but that’s not because of the hole, that’s because when they moved my jaw it stretched my palate and they had to do surgery on that again too :P)

Now that I’m older (again, 17 isn’t that old) I still struggle a bit, like for example, I struggle with my name - Brodie - because the hard r and d are too close together for me to make them both clearly (I just sort of have to pick one or say it slowly and over enunciate XD)

I hope anything I have to say helps you in some way!

Anonymous asked: The kind of clef that I have is... They say I have a whole in the top of the roof of my mouth, my parents lays to my there no way to repair it? Now I'm confused. If it is repairable then I spent 30 yrs of hell

A hole in the roof of your mouth? Well to me that sounds like a fistula which is what I had. A hole that was left when they did the original closure. They are very difficult to close as scar tissue is very hard to work with and the methods of repairing them for me at least were not very appealing. Also they tried to fix mine with a tissue graft but it did not take. However, when I had my jaw surgery and they dropped the roof of my mouth down they fixed it while they were in there. My surgeons told me that if they could close every hole that way they would, but it was a major surgery for a minor problem.

Also to clarify, when I said all clefts could be repaired I meant that you could do something about them, it may not be perfect, but something could be done. 

Can anyone else provide insight? I am no expert and am only 17 years old so I am not the best person to be asking! I wish you the best of luck! <3

Anonymous asked: Maybe this is a dumb question but are MOST clef palates repairable??

Not a dumb question at all, dear! As far as I know ALL cleft palates are repairable. I’ve never heard of a case of surgeons not being able to fix it. They can do all kinds of things these days with bone/tissue/skin grafts and all. I am no expert nor am I a doctor but to the best of my knowledge, yes, all cleft palates are repairable.

singme-a-lullaby asked: Hey! I was born with just the cleft lip, and I just had my sixth surgery for it. I've never met anyone else with a cleft lip or palate, and growing up, it was impossible to explain to people what it was and what it effected. I came up with the most elaborate stories about it though, because I got so tired of explaining what it was. Did anyone else come up with a funny or screwed up story about why you have it?

Haha oh wow! That’s great! What a funny way of dealing with it! Personally I was always very good at explaining my cleft and picked up on my doctor’s terms and was all proud of myself for knowing what I was talking about but when I was little I’d just say:

“God made me special and he just made you ordinary :P”

I tell you what though, I work at a pre-school and trying to explain to my little 3 and 4 year olds what my cleft is when they ask “What’s in your mouth?” or “Did you get a booboo?” referring to my scars. Little kids are just curious and don’t really get it!

Did anyone tell silly stories rather than explain your cleft? Please share in honor of Cleft Lip & Palate Awareness week :)

Stay strong; stay beautiful! <3

nobodys--girl asked: You're welcome~! ^^ Thank YOU for this blog!!

My pleasure :) Getting to meet you all is just as awesome and supportive for me as I hope it is for you guys! <3

nobodys--girl asked: Hello since it's Cleft Lip & Palate Awareness Week, I'd like to share my story~ I was born with a cleft lip & palate~I've only had an operation to close up the gap & some speech therapy~My speech is still impaired though~I think the hardest thing to deal with are the harsh words & looks you get from other people~It made me feel like I didn't belong~But because of that, it also made me a stronger person~I've made true friends and met people who accept me for who I am~My motto, Looks don't matter~

Thank you so much for sharing! I’d love to have as many stories on here as possible and yours is a great edition! It’s such a comfort and support for people to be able to come on here and see so many wonderful people who have gone through the same things and really understand what it’s like. I’d like for this blog to be as much of a support system as possible.

I’m so glad you have friends and family who accept and love you because that’s the way it should be!! Never think you’re any less of a person or any less beautiful. Everything you go through makes you a stronger and more beautiful person - inside and out!

So thanks again for sharing your story :) I encourage anyone who is willing to share their story, advice, or submit pictures in honor of the week :)

Stay strong; stay beautiful <3 And happy Cleft Lip & Palate Awareness Week!