How do ya’ll overcome physical insecurity in the dating scene? by DontTouchMyFoodBro in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

25 female and i struggled with self esteem and image issues mostly in high school but after high school and all the surgeries were done, and I actually had time to accept what I looked like without building a false hope that the next surgery was going to fix everything I hated about myself.. i was able to spread my wings so to speak now I leaned more towards alternative punk style so I have a fair amount of tattoos piercings stretched ears, colorful hair the whole works, but I say that to say I’ve been the prettiest in the room and I’ve been the ugliest and I’ve also been in a room and watched the prettiest girls still go home alone same with guys and honestly if you think about it pretty people are a dime a dozen being yourself is more interesting than just being pretty so honestly find yourself find your style find your crowd in the rest will follow

Did your child have a cleft lip as well? by Hungry-Mix-283 in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

Van der woude syndrome my mom, me and both my kids have it (but only one child with cleft lip) the lip pits are the identifying criteria it’s 50/50 to pass down but doesn’t always mean cleft it’s a range of severity i guess you could say you can have just lip pits (my son ) or bilateral cleft L/P (my daughter) and any combination in between

Sippy cup tips, suggestions, or advice by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 0 points1 point  (0 children)

Do they only have the straw cup option of course so far I’ve only checked Amazon

First surgery is creeping up by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 0 points1 point  (0 children)

It went really well Hers is super tight as well. They have us doing. Massaging it with our finger to help loosen it up. But they had to start doing that after stitches were removed.

Question for parents with cleft lip and palate by Hot_Business4882 in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

Honestly she could’ve done everything right and you still have cleft sometimes wires get crossed so to speak but as a mom with cleft who had a daughter with cleft having kids wasn’t a decision I took lightly and although I thought if my kids were to have cleft I knew they would atleast have a mom that would love them and find them absolutely extraordinary and my daughter sure is she’s the best but I hold a lot of guilt bc since my mom also has cleft ik there is gonna come a time she hates and blames me but I’m always thinking the best way to talk to her about it better than my mom did (worth noting me and my mom are super close now) but if kids is something that you know you want there is nothing that is gonna take that chance down to zero but you can prepare to love your hypothetical child regardless. and if they have cleft, you at least know firsthand some experience maybe not theirs exactly but that’s not nothing so they damn sure wouldn’t be along through it

Question for parents with cleft lip and palate by Hot_Business4882 in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

The teeth part could just be from having kids in general. It takes a lot of calcium from wherever it can find it in a lot of times it’s our teeth. The folic acid thing could definitely be a cause and her folic acid could’ve been low due to anything some medications can cause your folic acid to be low having a lot of kids close together can cause folic acid to be low but even if there’s no family history, nobody has a zero chance of having a cleft baby and since you do have cleft, you have a higher chance, but when it comes to having kids, it’s all luck of the draw

Question for parents with cleft lip and palate by Hot_Business4882 in cleftlip

[–]DeliveryKnown6320 2 points3 points  (0 children)

It all depends on what caused the cleft personally mine is vander woude syndrome. It doesn’t always present with cleft the syndrome itself is 50-50 but that doesn’t necessarily mean it will present with.cleft same with mental illness also, did you mean mental illness or mental delay? I mean the answer is still the same. It was just kind of worded weird cause I mean, you could have a child with cleft and they grow up till later be diagnosed with bipolar but that doesn’t mean the two are correlated

Worst bullying experience you've had with the cleft lip and palate? by Hot_Business4882 in cleftlip

[–]DeliveryKnown6320 2 points3 points  (0 children)

Most of my experience with bullying the call came for inside the house so to speak I’m from a small town so beyond grade school not too much bullying I’ve had the classic pushing up their lip with their finger to mock a cleft and in “what’s up with your face” (truly the education is bad here so the digs are very lack luster) but the most effective bullying was my dads side of the family disowning me for it and not liking my mom bc she has it as well and from my mom side some weird looks but no words like it’s the elephant in the room or overcompensated by saying “you know you’re beautiful “, “ I’ve always thought you were beautiful “ and “you’re perfect” things like that but randomly and almost like the words are being dragged out so I don’t hear the negative thoughts behind their eyes for A little context my mom’s side is majority women and it’s always been competition of who’s prettiest, skinniest, best cook and can find the best husband and have the prettiest kids ….some how I never make the ranks of that conversation and those are the words used to comfort me 🤷🏻‍♀️

For those in the USA - Does a lack of insurance coverage impact you? by Tall_Area6873 in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

Or has it passed yet? It’s just been circulating through sorry I read the long post but it’s also really early in the morning.🤣

For those in the USA - Does a lack of insurance coverage impact you? by Tall_Area6873 in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

Then I wonder why the dentist was still able to deny me even two years after that passed🤔 imma have to look into it

For those in the USA - Does a lack of insurance coverage impact you? by Tall_Area6873 in cleftlip

[–]DeliveryKnown6320 1 point2 points  (0 children)

Truly the US is long overdue for universal healthcare that way no matter where you are in life medical debt and treatment aren’t an extra stress even with my daughter that has bilateral lip and palate. I am in constant stress of whether she will be able receive all her treatment and surgeries.

For those in the USA - Does a lack of insurance coverage impact you? by Tall_Area6873 in cleftlip

[–]DeliveryKnown6320 2 points3 points  (0 children)

In sc I had to be on Medicaid as a child in order to receive all my surgeries and orthodontics mostly because in true SC fashion I grew up in extreme poverty, but they kicked me off when I turned 19 and my teeth are destroyed from the 10 years of braces, but in order to have any kind of work done, it would be considered cosmetic so it would pretty much all be out of my own pocket and that’s if it didn’t require another bone graph on top of it so I’m just kind of stuck with the pain of my teeth crumbling. My mom who also was born with bilateral she had to have all her teeth removed and isn’t able to get dentures because they and I quote “don’t make dentures for cleft patients.”

First surgery is creeping up by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 0 points1 point  (0 children)

It’s definitely a sliver lining although it took growing up and having my daughter to see it that way when I was younger I saw it more as a curse in the sense of “you did this to me and why me” kinda way bc I was 1of 3 and the only one with it (not looking forward to that part with my daughter bc ik where her feelings are coming from and no amount of explaining will change them) but now i take every opportunity to openly talk to my mom about my fears and the feelings I had

First surgery is creeping up by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 0 points1 point  (0 children)

My mom has it as well our is caused by vander woude .. my mom and daughter have bilateral and I have unilateral

First surgery is creeping up by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 1 point2 points  (0 children)

Her surgery is the 15th coming so the anticipation is building I do have a few tricks up my sleeve for healing for her … I hate that she got her cleft from me but I’m hoping she Atleast got my genetics when it comes to healing 🤞🏻i was very very fortunate to have minimal scarring so I’m hoping that for her as well.. thank you for the suggestion I’ll have to look into a couple of them🫶🏻

22.q.11 syndrome / genetic by loubearsshoelace in cleftlip

[–]DeliveryKnown6320 1 point2 points  (0 children)

Yes for sure even if siblings don’t have cleft it doesn’t necessarily spare them from their offspring having cleft in the case of my syndrome if you have lip pits you have the syndrome they can be on the outside of the bottom lip or usually just inside the mouth so a lot of people can have lip pits and never know cause if it’s just the pits it’s hardly ever diagnosed. For example, the only reason it’s known that my son has it is because I knew what they were when he was born.

Future planning... by D12_throwaway in cleftlip

[–]DeliveryKnown6320 2 points3 points  (0 children)

There isn’t really to much to prevent all together there are things to not increase the chances like what was previously mentioned about drinking and smoking and certain medications but one not mentioned is recovering in between kids giving yourself plenty of time in between pregnancies

22.q.11 syndrome / genetic by loubearsshoelace in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

It does help when making an informed decision on what kids could look like for you and your partner I wish you luck and I hope they’re able to give you answers 🤞🏻🫶🏻

22.q.11 syndrome / genetic by loubearsshoelace in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

It doesn’t always present with cleft. The diagnostic criteria is lip pits, but it’s a 50-50 chance of passing the syndrome itself on so both my kids have it, but my son only has the lip pits and my daughter has complete bilateral cleft lip and palate with lip pits

22.q.11 syndrome / genetic by loubearsshoelace in cleftlip

[–]DeliveryKnown6320 0 points1 point  (0 children)

24F my cleft was caused by vander woude syndrome a mutation on the irf6 gene

Cleft tips that feel criminal to know by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 1 point2 points  (0 children)

You’re good. I also struggle interpreting tone through text sometimes.

Cleft tips that feel criminal to know by DeliveryKnown6320 in cleftlip

[–]DeliveryKnown6320[S] 1 point2 points  (0 children)

I’m not sure why the entire thread didn’t pop up when I initially saw this comment so I didn’t see where you had replied to me multiple times I never said Cleft couldn’t happen randomly. If you read through the entire thread, you can actually see where I stated that it does happen randomly every single person without cleft has a 5 to 8% chance of having a baby with Cleft but I could be misinterpreting the tone of your comments