My Cleft Lip and Palate Story! - Tampa, FL

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Hi everyone! i was born with a unilateral complete...

hi everyone! i was born with a unilateral complete cleft lip nose and palate on the left side. i have had over twenty surgeries to date, including bone grafts, jaw distractions, lip revisions and rhinoplasties- the whole five yards! although i have all of the surgeries necessary to make life livable, i am still not quite done yet! i still want to fix many things about my appearance, but most notably, my nose and lip. i would love to have another nose job that fixes my asymmetricalities and makes the tip of my nose smaller and shorter. i feel like my nostrils are too long, and that the tip of my nose is too wide and 'fleshy'. i would love to have a small, angular nose, but for now i will just settle on fixing the things that have to do with my birth defect. i am going to pay a visit to my plastic surgeon soon, and i hope he has good news for me when i go!

upper jaw distraction photo!

i just found some old pre-op pictures right before i had my le fort I jaw distraction, and i decided it would be a cool idea to take a before and after pic with it! the surgery was in may of 2012 i believe. it was arguably the most difficult operation i've been through, but between the way to balanced out my profile, and made it easier to eat, talk and breathe, i'd say it was well worth it! :+)

saw my plastic surgeon today!

everyone in his office complimented me, and said i was very pretty. my doctor asked me what things i was concerned with, and i said 1.) the droopiness of my nasal tip 2.) my left nostril being asymmetrical 3.) the left side of my upper lip lacking any volume. he agreed with me on all these point and my surgery is scheduled for july 3rd!! i am so excited. he said he would do minor revisions on my nose for the problems i stated, and that he would be performing a dermal fat graft for my lip!

dermal fat graft results (???)

i've been looking EVERYWHERE to find before and after pictures of dermal fat grafts to the lips.
i am growing concerned that it may not be as permanent a solution as i need it to be.
the left side of my upper lip can't really be called a lip. there is no definition between the skin above it and the lip itself.
imagine a tattoo of an upper lip on your arm or something.
that's basically what i have!
does anyone have experience with dermal fat grafts? how much of the fat was reabsorbed, and were you happy with the procedure?

Ideal Proportions?

Hey guys!
I've been fiddling around a whole bunch lately and trying to figure out EXACTLY what I feel that I need to be fixed.
Basically, my nose is too long, wide, bulbous, and unstructured.
My nostrils are asymmetrical from the cleft.
My lips are too small, thin, and asymmetrical.
I feel like there are just so many things that need to be fixed still, and that just one more surgery won't be enough.
And as anyone who has undergone revision rhinoplasty knows, it gets tougher every time.
There is more scar tissue to deal with, and the results aren't as precise as you would want. I've had over 7 rhinoplasties already, so you can imagine my level of hope right now.
With my lips, I am slightly more hopeful. I've had only 1 or 2 revisions on them. I am undergoing a dermal fat graft, which is said to retain 70%-60% of its volume. That excites me.
There is ONE problem, though.
My surgeon is a pediatric plastic and reconstructive surgeon, he has been doing surgery on me since I was 3 weeks old, and I don't know how he would feel about really blowing my lips up. I want a really nice, full, upper lip, and I feel like my lower lip is just a bit lacking as well. I don't know exactly what he is going to say to that.
I am afraid that he might only want to correct the complete lack of volume in the left side of my lip and leave it at that.
My situation is quite a bit different, I am not seeing a private practice plastic surgeon, I am going to a children's hospital to have surgery covered by insurance for my cleft.
I'm going to try my best to present a good case to my surgeon as to why I need bigger lips, haha. Wish me luck!!

NO Surgery- Denied By Insurance

Today I was supposed to go and have life-changing cosmetic surgery that improved my appearance.

I was bullied out of high school because of my appearances. I'm in treatment for PTSD.

This was the thing that I was holding onto for the past year. I thought that if I could make it until my surgery, that my life would change and I would be on a new track, taking a turn for the positive.

I was denied. Likely by some bureaucratic old man who took pleasure in denying me the only thing that kept me holding on to any shred of hope. He and his friends probably went out and ate some rare steak at a nice restaurant after they had a nice chuckle.

I applied to the Little Baby Face Foundation because they provide cosmetic surgery for children with birth defects for free, but I was immediately denied there as well. Why? Because my case is less severe than girls with outward pointed ears and a bump on their nose- while I am here facing severe speech implications due to my upper lip being so thin and pushed back that I have a hard time making any sounds that involve your upper and lower lip coming together.

Well, I hope everyone is having a better day than I am!
I'll update everyone when I'm 30 and sitting at home having accomplished little to nothing because of the discrimination I'll surely face from walking around with such painfully obvious defects.

Advice for Cleft Lip and Palate patients seeking cosmetic or revision surgery

1.) If you can, get Aetna.
Their insurance policies cover birth defect revisions- the first I've ever seen that does this.
Research your insurance and potential insurance companies- look up "(Name of Company) reconstructive surgery" and if you cannot find anything, call them.
You are entitled to knowing what they do and do not cover.

2.) Go to a reconstructive surgeon.
Revision surgery is a much more delicate and complicated procedure than primary surgeries- especially rhinoplasty. The only procedures I would consider having done by a regular plastic surgeon would be scar revision, and possibly lip revision.

3.) DO NOT ever take one single doctor's word for something.
Don't trust your doctors implicitly, especially in the United States- this is how they make money. Don't forget that.
Trust is something that needs to be earned, and this applies to doctors too.
From my experience, some doctors tend to get inflated egos, and they may very well believe that they're the best for your case, when they may not be. Be critical about these things.

4.) Do your own research.
I recently found out, after a quick google search, that an excruciating surgery I underwent when I was 14 could have easily (and according to several reputable sources, really should have been) done in a way that would not have A) caused as much pain, and B) left as many scars.
My family implicitly trusted my doctors, and never questioned them, never looked into anything themselves. This was a mistake.
Please, be critical.

5.) Ask questions.
Write a huge list of questions for your doctors, anything you feel like you need to know, and then ask them.
Ask all of them.
It is your face, your physical wellbeing. You should be well-informed, and your doctor should try their best to answer them.

6.) I would suggest joining some kind of cleft or revision surgery community. Sometimes you need people that have your best intrest in mind!
On that note, you can shoot me a message if you want ^_^

These are just the things I've learned so far, I'm 17 years old and I've had dozens of surgeries. Trying to find surgeons to improve cosmetic flaws from cleft lip has proven incredibly difficult.

I'm not giving up just yet, though! :)
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