Multiple lip repairs

[Danno]

Hey Folks,
I've been reading through past posts and enjoying your insights. My 17 y/o son was born with unilateral cleft lip/palate. He had a lip repair at 3 months, again at 12 months, then again at 18 months. All repairs have initially looked good, but then after time the nostril falls and his lip has a noticeable notch. Well, we just took him in last week, and the doctor recommended another lip repair. This is not a revision...but a complete repair where they will take the lip apart and basically redo it. I'm told this is not uncommon by the doctors, but yet I never hear of other cases where this happens. BTW, his palate surgery went beautifully, and his orthodontics are coming along great. I just can't stand the thought of this poor kid having to endure another lip repair...especially at his age. I'd sure appreciate any thoughts or feed back.

Thanks!

Dan

[Jeff Alterman]

Interesting that your son has had issues with the cleft lip repair. I guess what might have happened is during the healing process, his lip became notched. Perhaps the two sides of his cleft were not aligned properly during the initial repair or during growth, the two sides grew unevenly. Perhaps the lip repair and the nose repair will be more successful now that your son is fully grown. I hope that I explained things to you and good luck with your son's complete redo of his lip repair.

Jeff Alterman at alterman156@verizon.net

[ryan15]

Hey Dan. I'm just like your son. I was born with a unilateral cleft lip and palate. A week ago I had a complete repair of the lip as well. Still a little swollen, but it's already looking a lot better than it was prior to surgery. Just make sure he does it during his offtime (during the summer when school's out I suppose) and after a couple weeks to a month of recovery he should be good to go. I am 21 years old and had to wait for a few other surgeries and orthodontics to be completed before I could have this surgery. I read up on the timeline of cleft repair and it is not uncommon that around the age of 18 (give or take) there are further revisions. The doctor wait til that age so that the patient is fully grown and any adjustments that are made will not be hindered by further growth and development. Just make sure to encourage your son and that after the surgery, it's all uphill from there. When he he scheduled to have the operation? Let me know how he does.

[KeepSmilin']

ryan, bet it feels good to have the surgery in the "rearview mirror" now, huh? congrats

just wanted to add my two cents here--hopefully it'll be helpful in some way. I'm 34 now, I was born with a bilateral cleft lip and palate, and when i was 15 i had my last (meaning, most recent, and final) repair done. What happened was, and I think this is common, I had my initial repairs as a baby and then the rest of my face grew and the middle of my upper lip didn't grow as much, so there was a bit of a gap--you could kind of see my upper teeth when I closed my mouth. So, at 15 what they did was, they actually took skin from my bottom lip and grafted it to my upper lip, and they also did some work on my nose so it wasn't as wide and flat anymore. These plastic surgeons are miracle workers, I don't know how they did it but they did and it worked really well if i do say so. I was much more pleased with my appearance after the surgery. A lot of people who aren't familiar with clefts (i.e. "the rest of the world") don't even realize i had a cleft until i tell them to look closely at the scars and they have to lean in

I admit, it was different to have surgery at age 15 than it was when I was younger. It was kind of like, "oh, this again, I thought I was done with all these surgeries when I was a kid" but it actually went fine and recovery was quick. My biggest concern was that I had a boyfriend at the time and I had to ask the doctor when I could kiss him again (it wasn't long )

Does anyone know, do they still do this type of surgery where they graft the bottom lip to the upper lip? i had this done in 1989, so it was a while ago. I'm pregnant and we found out that my son will be born with a bilateral cleft lip and palate, so I'm just curious. Of course by then things will probably have changed a lot more, too

Dan, good luck with your son and keep us posted.

[Danno]

Thanks, Ryan....appreciate you sharing your story. Nice to hear from someone who has firsthand experience. I asked the doctor about waiting until the orthodontics were removed...he said it wasn't necessary to wait. Now, we're trying to figure out the insurance thing. As of Jan 1, our surgeon is no longer part of our provider network.(his choice) We're going to consult another area surgeon who came highly recommended by another family. I'll make sure my son(Ryan) reads your post. Thanks.

KeepSmilin....thanks for the encouraging words....much appreciated. Our son has never had the graft from the lower lip. We'll see what the plan is for his upcoming surgery and I'll keep you all posted.

Take care,

Danno