Wednesday, September 30, 2009

Microform Cleft Lip

I just found out that Fred has a minor cleft lip. I'm sure many of you are thinking, "Duh, I could have told you that." Here's the thing, I noticed it the first time I held him and we asked the doctors about it. The pediatrician on duty said he'd never seen it before, checked him out and told us that everything (palate, lip) was formed but we could probably smooth out the ridge when he is older if we wanted. I also asked his pediatrician at following visits. No one ever told me it was a cleft until his third visit with the pediatrician here in Idaho. She asked me who fixed his cleft lip. When I told her that nothing was fixed, he was just born like that she said that it was a cleft lip and recommended a surgeon. Insurance covers it.

Yesterday was the consultation with the surgeon. he said it is a microform cleft. From wikipedia:

A mild form of a cleft lip is a microform cleft. A microform cleft can appear as small as a little dent in the red part of the lip or look like a scar from the lip up to the nostril. In some cases muscle tissue in the lip underneath the scar is affected and might require reconstructive surgery. It is advised to have newborn infants with a microform cleft checked with a craniofacial team as soon as possible to determine the severity of the cleft.

Basically, it is a cleft lip that decided to fuse together just in time. They are usually fixed at about three months. The doctor said he can make it look better--take away the peak on his lip and smooth out the ridge.


Here's the thing--actually, there are a few things.
1. I'm not bothered by it.
2. But maybe Fred will be one day.
"..children with clefts tend to report more dissatisfaction with peer relationships and higher levels of social anxiety. Experts conclude that this is probably due to the associated stigma of visible deformities and speech abnormalities, if present. Children who are judged as attractive tend to be perceived as more intelligent, exhibit more positive social behaviors, and are treated more positively than children with cleft lip and or cleft palate.[15] Children with clefts tend to report feelings of anger, sadness, fear, and alienation from their peers. Yet these children were similar to their peers in regard to "how well they liked themselves."
Maybe I'm just biased but i don't think Fred's is drastic enough to make him 'different'.
3. We can get it fixed anytime. We don't have to do it now. But we have insurance now.
4. Fred would have to take it easy for ten days after the surgery.
TEN DAYS.
TAKING IT EASY!
I don't even know if that is possible. All throughout the visit Stella and Fred were hugging (which usually results in falling over and wrestling), playing choo choo train, climbing around the room, etc. The doctor recommended shipping Stella off for a week. He said we could have a grandma come stay with us (both grandmas are pretty busy) but that doesn't eliminate the sibling play dynamic. I'm not sure how Stella would do away from the family, by herself. Summer would be better when I could send Chloe with her.
I just don't know if it is worth the hassle (and deductible). I would love to know what everyone thinks.
fyi: Joaquin Phoenix has a microform cleft.


25 comments:

Naomi said...

I personally never noticed that he had a cleft lip. Maybe it didn't show when he was younger...since it has been a long since I have seen him. I don't know what I would do. Maybe wait and he can make the decision when he is older. It is not ver noticeable to me.

Tresa Fowler said...

I didn't notice it either; who could see anything past those gorgeous blue eyes. We have a similar situation in our family. The cartiledge in Gavin's left outer ear didn't form properly and his ear sticks out quite a bit. When I mention it to people, they do a double take at him and comment that they would have never noticed it if it wasn't pointed out. I'm guessing it will be the same with Fred. We haven't gotten Gavin's ear fixed yet; we are waiting for him to tell us to do it and so far his ear doesn't bother him at all. I would wait and see what Fred wants to do.

Cyndi Rella said...

I think it's cute. And I think it still will be when he gets older.

Winnie said...

I agree with Cyndi. It adds personality and I don't think that it's noticible enough to cause any anxiety issues. Besides, Joaquin seems to have acheived quite a level of success with his.

LoGunns said...

I think it's fine and if he wants to get it fixed later he can. (when there is universal health care-haha)I don't think he will even want to get it fixed. It looks like a scar and scars make you look tough.

amy said...

I dont have anything good to say. I just know that I was the big dork with my thick glasses and then my parents finally fixed it I felt great. I was a new person. but glasses are different than a "cleft lip"- I noticed Fred lip, but that doesn't mean it is bad, I just notice it.... I do think coudl be just cute when he get older. And it could just give him personality. LIke my last name, I have to teach my kids to have a personality so they can be tuff. so teach Fred to have - oh wait, let him keep having his strong personality and he wont have any problems at all.

Em-Cat said...

I think it gives him character. I agree with everyone else. Let him make the decision to ge the surgery or not when he's older. I used to have a mole on my face and my mom would tell me it was a beauty mark. It made me feel special and I liked being different than everyone else. (We got it removed when the doctor said it could be cancerous) If you tell him that it's cool to have a mark on your face and that's what makes him special, he'll probably grow up liking that feature on his face. I personally think he looks cute and would be sad to see it go.

heat said...

I lean the other way-
It's true Fred is cute. And his scar does give him personality but I would have it fixed. Not necessarily because of an image thing but because speech abnormalities are common. I know a few parents who didn't correct the cleft until the kids were older. The surgery worked fine but correcting the speech has been a long process. Speech may not be much of a concern since it is minor though.
My uncle has a scar that looks like a cleft lip. He's worn a mustache since high school.
You know Fred better than any of us. You'll know what to do.

Staci Leach said...

just don't compare him to Joaquin Phoenix! He is a major druggie! I think he is just fine, but if it is smoothing and ins covers it, I'd do it so that the teen years are not as affected by it. He can obsess over something else...or is that just a girl thing?

Anonymous said...

I grew up with a friend (boy) who was born with a cleft palate and a hair lip (not sure just what that means) but his lip was similar to your Fred's.

Of course a cleft palate had additional complications and he went through many surgeries to correct it - and years and years of speech therapy.
We were both born in 1970 - however - so I'm sure nowadays they can handle Fred's lip with one minor surgery.

He was teased. he was a skinny red-head with a funny lip and a speech impediment.
But because of speech therapy, he became very interested in oratory and was successful at competitive speech in HS, went on to Law School - and is now a practising lawyer.
(he still talks kind of funny - when we were in college my girlfriends would point out that he talks funny - but having been his friend for 12 years at that point - I didn't notice it anymore)

All that to say - I'd go for getting it fixed. My friend had to endure many surgeries... your Fred may have just one. and if that could prevent possible speech problems and years of speech therapy - I'd say it's worth it.

Maybe wait for summer so that you can send his siblings away for a restful week.

charetv said...

hello, my daughter has the same type of cleft as your son. im new to this blog thing but i will be posting pictures of her soon. i dont know if it has a private message or something but i had a few questions if you wouldnt mind. im struggling right now because her pedi is telling me she hightly recomends the surgery and my fiance wants her to get it as well. i think she is perfect the way she is and it scares me to think of her in surgery. she is 5months old and so far her lip is not causing any feeding issues and shes nice and loud :) it is tugging up a bit since she was born...well i hope you can help me out with a few questions. thanks for your time :)

kdthomas said...

I just found your post when researching "microform clefts" because my 2-month-old son was also born with one. My daughter (now 4) had a true cleft lip and a cleft in her soft palate (no family history!) but we were surprised to see that our son had a small cleft as well. We just went to the craniofacial unit at Children's (we probably wouldn't have even thought to go there if we hadn't already gone through this with our daughter) and they suggested surgery. After going through it with my daughter, I really don't want to do it again and am facing the same indecision you seemed to have faced back in 2009. I'm wondering what you decided and how you feel about your decision. I hope this isn't too forward of me, I'm just trying to figure out what the best choice is for him! I, too, think he looks just fine the way he is. And your little Fred is ADORABLE! If you don't mind, I'd love to hear how things are for you now, a year later.

k8theriver said...

kdthomas, i don't know how to contact you so i will leave my answer her in case you come back.
i guess by not deciding we are deciding :). we haven't done anything about it. we didn't want to do anything until we knew he was capable of watching movies and sitting still during his recovery. the surgeon we saw said we could have it done anytime. so we still consider it. but for now, he's still the same.
good luck with your children!
katie

Anonymous said...

Regarding Joaquin Phoenix?

When I saw 1st him in the film the Gladiator..The cleft was the very thing that stood out when he 1st appeared in the film. Watch it with others and most of the time you'll get a comment on it. It stood out so much that when watching it again this past week, out of curiosity I decided to google it as I thought it was a scar etc.. And low and behold that's how I ended up here..

Olivia Mannix said...

Hi Chloe,
My second child also has exactly the same microform cleft lip as your son does.
Elias is now 8 months and i am just debating whether i should look into cosmetic surgery.
I was curious to know what you decided to do? whether you went down the path of surgery or not.
Olivia (From Australia)

Olivia Mannix said...

Hi Chloe,
Sorry, i just read further with comments, and realised someone else asked the same question. So dont worry about replying to that. I guess my question is maybe to anyone who knows....Can cosmetic surgery correct a microform cleft lip, obviously cleft palate is an absolute necessity for surgery, but in our situations can the surgery correct the line above the mouth and the 'uneven' nostril? i think i need to probably just go and pay for some consultations with some surgents. My son looks very similar to yours - absolutely goirgeous, blonde hair, blue eyes, his long lost twin is here in Australia. Anyway, I know i give this far to much thought. It is silly really. I wish i just didnt care about it. I just worry to much when his older, and am concerned whether his teeth or speech may be impaired.

k8theriver said...

olivia,
i would take your son to a surgeon. that way you'll know if he needs it fixed for speach reasons. our surgeon told us that his palate was fine and he didn't need the surgery except for cosmetic reasons. yes, the lip line and the nostril can be smoothed/evened out. also, in the u.s. this surgery is covered by insurance because it is considered a birth defect.
fred is now almost 4 and we haven't had the surgery.

Silver said...

My daughter, who is now 4, has a very similar microform cleft lip. Her lip is a little more smooth than your son's, but she has some nostril asymmetry. (See her photo on the mail page at www.myorities.com).

We decided to leave the lip alone. She'll eventually have minor nose surgery to improve her symmetry.

When she was born, this totally freaked me out. Not I rarely think about it. She's beautiful, in every way. :)

Rachel said...

He is a beautiful boy anyway, but i know how he will feel. I was born with a cleft lip and it wasnt too severe, but it was worse in the way that it didnt seal up on its own. My surgeon was amazing and now i have a scar similar to your sons. I have always been proud of my scar (even when children werent as forgiving)but my parents treated me like a normal kid and the topic of my "deformity" (its a running joke now haha)hardly, if ever, came up.

The best advice i can give is this: Treat your son as you would any other, teach him that he is unique and special because of his scar and to be proud, and support him if he wants to have it worked on. My parents did that and i can say im proud of my deformity! :D

ekin said...

hi everyone. im 28 years old. i'm also has a microform cleft lip.. next month i will do my surgeon. but i'm too scare because i felt when the surgery is done, my face become more stranger. i dont know what to do. thanx..

mugwort said...

I think it should be your son's decision on what do regarding his microform cleft. One thing I know he should never be pressured. He should decide solely based on what he thinks is best for him.Joaquin Phoenix voluntarily went to rehab2005 for drug problems. He realized there was a problem and he did something about it. Great actor.

Karla Hernandez said...

My son was born with microform cleft we noticed it but he also was born with transposition of the great arteries so no one payed clothes attention to it until we pointed it out to his pediatrition he didn't know what it was so he directed it us to Childrena Hospital Seattle and they really didn't give us a choice about doing surgery just told us he would get surgery when he turned one he got surgery in may and he did. Great was drinking and eating the same day. We left the hospital 24 hours after surgery recovery was fast. It is challenging having them still for 10 days but we did it he has nose stents little tubes to hold the structure of the nose until it heals he's going to have them in for three months the scar is pretty much the same but his nostril has changed his whole face he looks so much better

kelly said...

MY son was diagnosed with microform cleft lip when he was 6 months and doctors told me if I wanted they could do surgery on him but otherwise he does not need it. So I spoke with his dad and we decided that he as long as he can eat okay and is healthy he doesn't need the surgery. Now he is two years old and a healthy little boy but as he gets older I keep thinking what if he starts getting bullied for his lip. That's my greatest fear.

Anonymous said...

I grew up with a microform cleft and one nostril bigger than the other. It was really noticeable when I was young and kids teased. By my teen years, it seemed to straighten itself out and is barely noticeable. Every once in awhile someone will asked how I got the scar. I used to say if I ever got rich, I would get it fixed, but I never got rich. I guess as long as air gets in and out, then it's just fine!

Darla Jo Reinhardt said...

My son, born in 1979 , was also has a microform cleft, and 2 baby teeth on the gum scar line. Those and his adult tooth came in sideways. I noticed it when I first held him and was told nothing was wrong. I just heard of this cleft only a few years ago. His childhood dentists always asked who his surgeon was...lol. It's his face and I love it the way it is.