Mommies of cleft-affected children

[annakiss]

Hello, I'm looking for other mothers of cleft-affected children. I originally tried to join a cleft group on widesmiles.org, but have had no luck getting them to acknowledge me, so here I am.

My ds was born with a complete, unilateral cleft of the lip & palate. We didn't have any ultrasounds during our pregnancy, so it was undiagnosed until birth (which was at home). I'm interested in knowing about others' stories and experiences with clefts.
We've had a relatively easy time with it, but have a very long way to go. Ds has had two surgeries already and is scheduled for a third in May - at 9 mo. He eats EBM, but not much in the way of solids yet (he hasn't figured out how to swallow them, though I'm not sure why), and has had some recent trouble with rice cereal coming out of his nose. His surgeries went well, but he had some trouble in recovery because he didn't eat for several days each time, and with the first surgery had some breathing problems due to being zonked out on coedine. His scar is forming very thickly, which our doc doesn't particularly like.

I was wondering what others have faced with health professionals - did you find, as I have, that very few people know much of anything about clefts, and the specialists are unable, or perhaps unwilling, to give any kind of rough sketch of the next 20 or so years (which is how long I think we'll be dealing with surgeries from what I've pieced together)?

[indiegirl]

Hello and welcome to the SN forum. I don't have a child with cleft issues (my dd has a hearing loss and subsequent speech delay), but wanted to offer a big :welcome to you. I'm sorry no one acknowledged you at widesmiles.

You're very welcome here.

That's so neat that your son's grandmother caught him!

Jesse
Homebirth mama to:
Violet 7-14-00
and Zoe 2-5-03

[Piglet68]

Annakiss - we've already spoken via PM, but wanted to give you a big ol' welcome here on the board, too. I hope you find the support you need!!

:grouphug

[Monica]

Jacob (now 3.5 yrs) was born with a unilateral cleft lip, aveolar notch and bifid uvula. He had one surgery at 3 months to repair the lip. He has had some speech issues, but a relatively easy time of it. He too was undiagnosed, despite ultrasounds, so was also a suprise at birth. We see an annual craniofacial board and they only like to give me enough information for the next year and not much beyond that. Although for us there isn't much to do but sit and wait. We won't opt for a scar revision until Jacob is old enough to understand what and why it is happening and as far as dental work goes, we have to wait for his adult teeth to come in. His first ped was very knowledgeable and would kind of prep us for meetings with the case manager and craniofacial board. Everyone since then (including 3 different pediatric dentists) have been complete idiots about it.

I too felt unwelcomed at widesmiles but thought it was just because our cleft was so mild. Sorry you didn't get any help there, probably talking to people with kids a few years older would give you the best idea about whats to come.

[oliviagoddess]

:jaw Wow, I thought that with today's medicine, thing would have changed! I am married to a man who was born with cleft pallete and lip (I'm not sure of the technical terms for his problem).

He was born in 1971 and went through many of the things you are describing. The worst part was being in the hospital after birth tied to boards (like on a cross) with tubes going into him. After hearing this, I realized why he had such abandonment and trust issues despite having a loving and supportive family.

I believe he had over 30 operations and at 16 finally said that he had had enough and refused further surgeries. His parents insited on skin and cartilige to repair the palette (instead of a steel plate), which was taken out of his hip. When we first met I had asked him if he had gotten into a knife fight (he was Army Airborne Infantry at the time and his scar was slight, more like the little dent under his nose was crooked and he had a scar on the side of his nostril), he was a bit embarrased to tell me it was nothing so cool. I accepted it and told him that it made him look rugged (later I told him he was the coolest person I knew, but I'm just a big dork).

His biggest worry after I we decided to get pregnant was to make sure it wasn't genetic. We went to genetic counceling and it was suggested that we hed one of those new, high defenition ultra sounds (at that time rare to find, but more common in hospitals now) to take a look at the lip. We were told that if the lip was normal, they could not detect a pallet, but if the lip was malformed, they might be able to peek through and see the palette.

Everything was normal for us, but I researched feeding methods just in case (I was desperate to breastfeed and I know some babies cannot make a propper seal to suckle).

I can't really offer advice on what to do through in the early stages, but I can tell you some things to look out for.

1) Some of these children develop severe reactions to drugs and latex (sodium penethol and latex for my husband - truth serum and condoms! that was our big joke if he ever got captured behind enemy lines). Ask about having them perform latex free surgeries (they do it for some spina bifida babies also - doctors just assume they have a latex allergy from the start). The surgeons and doctors wear latex gloves inside of silicone ones, thus reducing the child's exposure to it.
2) Be as concerned with the internal surgeries as you are about the plastic surgeries. My husband has really bad sinus problems (constant blood clots and nose bleeds at 31) and sleep apnea because of severe scarring in his nose ans sinuses. We are making the rounds to Ear Nose & Throat doctors to see if there is anythign to be done.

That's all the insight I can offer for you, but keep in mind that you are your child's advocate. They may treat you like a big pain in the ass, but that's because you are making them do their jobs and asking questions. If your medical insurance allows, get second and third opinions if you don't like the doctor's attitudes or answers. There are options out there and I am sure specialists who are more sensitive to patient needs (pediatric surgeons are sometimes big asses becuase their patients don't talk back to them, so just pop that ego).

Good luck and lots of love to you and your family!:love

[annakiss]

We just went to our six-month craniofacial clinic on Thursday where I was better prepared to ask more specific questions (as opposed to when Alex wasn't quite 4 weeks old). Our plastic surgeon was there, who is fabulous. He's hailed as one of the greatest cleft surgeons in the country and yet is one of the kindest doctors I've ever spoken with. He also is just crazy about Alex - perhaps because Alex is presenting as such a challenge with the extreme width of his cleft causing an odd anatomy, as well as his intense scarring, though maybe just because Alex is such a great kid. I asked him about Alex having trouble with solids - how he can't seem to figure out how to properly move them from the front of his mouth to the back, but also said I wasn't that concerned as he's getting EBM & that's working out okay (thought sometimes he goes through growth spurts which depletes our supply). I asked if he was having trouble because of the cleft or if maybe it was because of the Haberman nurser he uses which doesn't require him to suck or do much of anything to swallow except chomp on the nipple. He said it was probably a combination of the two, but that with practice Alex will be able to overcome it. He also said - and for this he shut the door - that his own youngest son didn't eat solids hardly at all for a year and a half, but just drank breastmilk and that he felt this was just fine. I was so thrilled that he said this b/c it reinforced the fact that I like this guy. It's not often that you get a health professional telling you that exclusive breastfeeding is okay past six months, let alone for a year!

Immediately after this conversation, however, I met with the dietician who told me that I wouldn't be able to keep him supplied with milk and that there's a "window of opportunity" that I need to take advantage of or else he'll - I don't know what exactly, I guess NEVER eat solids! I immediately quit arguing with her when she told me I wouldn't be able to keep my supplies up to satisfy him. I couldn't believe her! It's no frigging wonder women have "supply" problems in this country - nurses/health professioinals are telling them they have them! Well I don't need to be told. I know just fine how to increase my supply if need be, thank you.

We talked also with the orthodontist & dentist who were just about useless yet again, even though I was armed with my questions. I wanted to know about what would be done for Alex's missing section of gum and what kind of orthodontia he might need. They said that they didn't know. Now, I can respect that they don't know how his teeth will grow in, but they could at least give me some kind of idea - like what happens in circumstances like this with other kids, or what could potentially happen even. So I asked. They said that he'll probably have an orthodontic evaluation between 6 and 8 - when adult teeth are coming in - and that he might need some orthodontia to expand his palate some. So I wondered about braces. They again said they didn't know. I said that I'd heard of kids needing braces for years on end to correct their teeth. They said that he'll probably need some sort of orthodontia, but they didn't know what. So I asked what would be done for the missing teeth - they said nothing. Which sort of bothers me. They said that nothing will be done until the jaw is done growing when he'll get maybe a bridge or an implant. So Alex has to go his entire childhood with missing teeth, possibly into his early twenties. They were pretty adamant, however, about me cleaning his gums after every feeding with this new Gerber product to avoid bottle rot or whatever it's called. I pretty much decided to ignore that. I guess they don't think I have enough to do that I need to clean his gums after every feeding so he can get used to the sensation for when he has teeth to actually clean. Please somebody tell me that I'm not insane for thinking this is utter BS! I also pretty much decided as they were talking to follow the advice of my plastic surgeon to find a good, perhaps KIND orthodontist when the time comes.

The Speech Therapist was useful however. She said that he probably will have some trouble with plosive sounds like 'Baa' and 'Paa', but that she was impressed with what he was doing so far. Looks like he'll need agressive speech therapy, but we have to see how he's doing in the fall before embarking on anything specific. For now it's up to me to get him talking the same way that other parents get kids to talk.

Alex also had his hearing tested and he passed! So the ear tubes are working and he can hear just fine! Permanent hearing loss isn't something that really goes hand-in-hand with clefts, but when your eustachian tubes don't work, fluid builds up and you can't hear & Alex hadn't had a good test since getting the tubes back in November.

I was also able to ask the Ear, Nose & Throat doc about the proper functioning of his eustachian tubes and he said that around eight years of age kids get about the best function out of them as they can, so that's the age to really discover if he's going to continue to require tubes or not. He said he may only need the one set, or maybe just a couple, depending on how well the muscles begin to function.

I told the nurse who organizes the specialty clinics that she could provide my name & number to families with new babies with clefts, so I might be getting some calls here. I said that I wasn't an expert, but then one of the other nurses chimed in and said that I was. From what I can tell, families who go through it are the best people to talk to about what to expect. So far we've been lucky with the day to day care of Alex, but we've had it rough during his recoveries. Hopefully this next recovery will be short. Our surgeon has decided to hold off on another lip repair until Alex is three or four to give it some time to loosen up on it's own. It doesn't look as though the lip revision made a significant change to his scar so far. The doc wants me to massage the scar but Alex just screams bloody murder whenever I try.

So I guess that's enough update for the moment. :D

[Monica]

Thanks for the update. I am glad things went well with your surgeon. We loved our surgeon too, despite him "forbidding" me to nurse Jacob for 2 weeks post op - I started again 4 days post op (unbeknownst to him). I also have been similarly frustrated with the dentists. I just think there really is no way for them to tell what the future holds for your child and I think they err on the side of trying not to scare or overwhelm the parents. We spent Jacobs first 18 months being told there were teeth missing (all his other teeth came in except for the 1 in the cleft in his gums) Then one day I looked and there were 2 teeth fighting for the position. My regular dentist said there really is no way to tell without an xray (which we had refused) and that they probably took so long to come in because they were trying to squeeze into the same space. Anyway, now we are told that just because there are 2 baby teeth in that spot, that does not mean there will be 2 adult teeth, could be one, could be none. So our dental future is uncertain. And at our last craniofacial board (in Nov) for the first time in 3 years I was told that Jacob would need a bone graft for his gum with the donor site being his thigh. I am a nurse, so I know that this is how this done, but it was really startling to hear as a parent.

Ignore your dietician. Your son will some day eat solids, can you just imagine his nutritional status if you weren't giving him breastmilk? Even if you can't keep up with his need for his total nutrition, anything you are willing to pump for the next few years will benefit him.

A word about massaging. I never did it, even though every Dr. I ever saw said, "ooh, the massage is working so well" Jacob hated it and just kept my fingers crossed that I was doing the right thing. He is 3.5 and you can see his scar but you can't feel it.

We aren't going to do any scar revision until Jacob is old enough to understand why we are doing it and can be part of the decision making process (if he decides not to do it until he is an adult that is fine with me) Well, I need to be making arrangements for our next board in the fall, we will have to travel from New England to Va to see our board. We are Navy and are limited to the number of craniofacial boards available to us.

My last piece of advice is to prepare your son for every encounter with the medical field. Explain (as best you can) what is going to happen, why it is being done, what your child's responsibilities are. Then ask your drs/dentists etc to tell your child what they are going to do before they touch your child and if they don't then you do..."honey, the dentist is just going to look in your mouth, he is going to put his fingers in there and it will feel funny, he isn't going to hurt you, mama is right here holding your hand." We talked about every step of our last board with our 3 year old and he went right in and opened up and let everyone (students included) have a peek, he even let the dentist gag him a couple of times to show his uvula and when he had enough he told the dentist "no more" and was respected. When do you have your next surgery? How often are you seeing your board? Hope all is well and you get some other parents interested in some kind of support/play group.

[Piglet68]

Originally posted by annakiss
I met with the dietician who told me that I wouldn't be able to keep him supplied with milk and that there's a "window of opportunity" that I need to take advantage of or else he'll - I don't know what exactly, I guess NEVER eat solids!... It's no frigging wonder women have "supply" problems in this country - nurses/health professioinals are telling them they have them! Well I don't need to be told. I know just fine how to increase my supply if need be, thank you.


:clap :thumb

you rock, mama!!! you are :supermod

:love

[Cynthia Mosher]

This was sent in by a reader of the website who saw your post in the Post of the Week section of our Mothering Newsletter:

This mother needs a referral to a cleft palate/craniofacial team asap.
She should go to cleftline.org. Please refer this information to her.

Best wishes to Alex. Sounds like he's got a fab mama looking out for his best interests. :)

[annakiss]

We loved our surgeon too, despite him "forbidding" me to nurse Jacob for 2 weeks post op - I started again 4 days post op (unbeknownst to him).

Good for you! From what I've been told, if your kid can't eat with the fresh repair, then your doc must not be too confident about the stitches. This may just be advice that docs have become used to giving though, as it seems to be very common, though I've never heard of kid's lip adhesions coming out (in recent years anyway). I think it's just a leftover precaution from the days when plastic surgery was not what it is now.

This mother needs a referral to a cleft palate/craniofacial team asap.

Thanks! I got one already!

[Monica]

Annakiss - the not nursing post op was much more distressing the repair, the arm braces, and hospital stay combined. As soon as I started nursing him, his whole disposition changed back to my happy baby despite all the other uncomfortable things going on in his life. Even if there had been no nutritional reason for nursing I would have done it purely for comfort.

Edited to add, that the first few days of nursing required help from another adult (dh and my mom) to hold my ample breast back off of his suture. It was kind of tricky for a few days.

[annakiss]

Alex has his 3rd surgery on Tuesday (May 13th). It's to finish closing his palate and should be the last for awhile. Each time the surgeries come up, I begin to think more about how I wish he didn't have to go through this. I think back to when I was pregnant. At some point towards the end of my pregnancy, a calm descended over me and I felt convinced that everything was going to be okay - that my birth would go fine & the baby would be fine. Somehow I was completely convinced. Maybe in some way it was me convincing myself, or perhaps just letting go of fear and doubt. What else can you do but to release it anyway? But then the birth happened, and it went fine; it was hard, but it was at home with my family and there were no problems. But then he was born with this huge gap in his face. At first I didn't feel so great about the birth, and I wonder now if maybe seeing him with the defect had something to do with that. I had the birth I wanted, but there wasn't exactly a happy ending. I knew it could be fixed & I tried not to worry and actually did a pretty good job about it, but still, I didn't have my perfect baby. And I felt and still feel sometimes so pissed off about that. I see perfect babies everywhere. They are so easy to have. Women who drink and smoke throughout their pregnancies have babies who are fine. I drank and smoked before I knew I was pregnant (because I wasn't planning a pregnancy) and I feel like I'm forever going to be paying for that. Or worse yet, my son is paying for it. And I keep trying to tell others and I suppose to tell myself, that that didn't necessarily cause the defect, and I know that that's true. I understand that not having a daily doseage of folic acid in my diet didn't cause the defect, but I also know that it could have helped to prevent it. At first I thought I was paying for mistakes I'd made, and I suppose I still sometimes think that. But I know in my heart that I'm a good mother and a decent person. I sometimes think that I should have another baby at some point (something that DH & I are as of yet undecided on), almost just so that I can do things right. But what if something else happens? What if something else goes wrong? I feel so much like my body really failed me this first time around. The DNA in its rapid replication screwed up somewhere. Things went a bit haywire and my son's mouth didn't close. I just want some answer as to why. I don't believe in God, so I can't turn to that. And science offers me no comfort here. I just don't very well trust my body to do things correctly, even though I feel lately, oddly enough, as though my body has been healed by the birth. I trust my body in ways that I didn't before the birth, but that has nothing to do with the cleft. The cleft is the dark secret that my cells keep. I just am having trouble letting it go and leaning back into the light.

[Qtopia]

:hug

annakiss, your last post was just beautiful and heart wrenching. I need some time to mull it over but I really want to talk about it with you. I am in awe of your honesty and strength.

love and light
carolina

[Gemini]

Please forgive me for not reading through all of the posts here. I do not have a child with cleft palate, but saw a wonderful add in the paper this morning and wanted to share with you all. It is a donation program called "The Smile Train", for children in developing countries to get surgery. It *seems* to be on the up & up, but was wondering if it was something you all had heard of and reputable?

www.smiletrain.org

[annakiss]

I've never heard of the smiletrain - and sorry for taking sooo long to reply to that.

But I have an update on my son! Aleksander had his 3rd surgery on June 10th (just about 2 weeks ago). It was to complete the whole in his hard palate and the surgeon also took out some scar tissue from his right nostril to give him some breathing room. The surgery took a little more than an hour longer than it was supposed to, but we're accustomed to that. The surgeon yet again commented on how difficult Aleksander's cleft is to repair. I guess for him this was the most difficult surgery because of the complicated sewing back together he had to do. But for Aleksander, it was the easiest surgery by far. He ate right away and kept on eating! He came home the next morning. Once home, he did have a bit of an adverse reaction to the Lortab he was on (made him really hyperactive), but we quit giving it to him and he eventually calmed down. For a few days he woke up in the middle of the night, but he's now back to his regular schedule. He'd also been grumpier than usual for a while there, but seems to be back to his normal, happy, destructive self.

This is his last facial surgery for a couple of years, so we get to experience normal babyhood for a while now (even though he's not going to be a baby for very much longer). He may need new eartubes in the fall, but that's a pretty simple procedure and shouldn't cause any problems. His next surgery will be when he's 2 or 3 and will be another lip repair.

[emopacman]

I am not a mother of a child with cleft lip or palette but am I teenager with it. I am 16 (17 in july) was born with bilatteral cleft lip and palette. Since your son Alex has unilatteral there might be differences in how he develops. fortunatelyfor me is placed convientantly so that it is nearly completely covered during bathing suit seasons. When I was younger I had alergic reactions to milk and the formulas but lactose intolerance also occurs on my fathers side so this might not be related to my cleft at all. I had a quad helix when I was about 6 or 7 to expand my palette. I was also a very small child I wore 18 month toddler clothes when I was about 3 years old. The docters But I'm hoping by giving you a little bit of information on what I've gone through it might help you grasp what Alex may go through. First of I had a total of 9 surgeries before I was 2, most where just for bassic repairs to my lip and palette and include a bone graft which was taken from my hip. The scar is rather longer but very thin and not very noticeable and also say this is because my growth was slightly stunted from all the surgeries over such a short period of time after birth. as a child I also was vdery prone to ear infections, something docters say is comon with cleft lip and palette patients. I've had tubes in my ears a total of 9 times. My cleft and palette also caused me to have a nasal voice and trouble pronouncing some things as a kid so I took speach therapy until I was in the 3rd grade at which time they decided I was done. I also tend to be a 'mouth-breather' because of it and prefer breathing through my mouth when sleeping also and sometimes snore during my sleep when breathing through my nose. However I have never had an asthma problems. In the 6th grade when I was about 10 or 11 I had an abbe flap which took 2 surgeries. Which, if you don't know, is where they take a small bit of your bottom lip and put it into your upper to make it fuller and the lips are sewed and connected together by a strip in the middle for 2 weeks. I was able to eat fine during the 2 week process and it wasn't really painful either but I did take off school. It did leave medium scars which where made fainter by having my surgeon scrap off any excess scar tissue. I'm not totally sure though that the abbe flap wasn't entirely cosmetic though. Teeth should also be watched carefully. I never had any real problems with my teeth ither than having to get braces. One thing you might encounter if Alex later on doesn't always take the best care of his teeth is having to get anesthia in the gums will be painful because of all the scar tissue on the upper lip. My teeth have came in normal if not a little crooked. I got braces when I was around 14 years old. I did have to get another quad helix first though to widen my palette even more. I will have had my braces for 3 years this november but am expected to get them off before then sometime before this fall school year begins. The orthodontist estimated I would have braces for 3 to 4 years and although my teeth have move faster than expected it still isn't far from the estimate so I would suggest getting him into them as soon as possible. One thing to be sure to watch for after the quad helixes are removed and really anytime after that is if Alex seems to be getting any drainage in his mouth. Meaning if he can directly pull nasal drainage through his mouth their may be a problem with a hole in his palette which can easily be caused when widened. I have one now that is smaller than the head of a ball point pen which is merely an annoyance and can easily be fixed. This summer I am expected to have 3 surgeries. One is to fix the minor hole in the roof of my mouth. Another is half my upper jaw being brough forward for basic orthondintic purposes since I have an underbite(like an overbite in reverse) that can't be repaired with rubberbands. This is actually a more common surgery than you might think. And finally a full rhinoplasty. My plastic surgeon is Dr. John Weeter, also a highly acclaimed surgeon in clefts, he has been to alot of middle eastern and african countries to repair clefts over there for free. He has been a very kibd and understanding man and has been with me since birth. He doesn't get annoyed when he sees how antsy I can be or concerned about my physical appearance or belittle me for being concerned. Once I was old enough to really become conscious of my physical appearance he offered me an amazing offer and told me that once I was done developing and old enough he would be glad to give me a full rhinoplasty, free of charge. And now that that time has come his offer still has not wavered. I would be lying if I said I'm not excited. Mostly because the thing I have had the most trouble with as someone with cleft lip and palette has been handling it emotionally. As a girl I am much more insecure with myself and have taken anti-depressants at points but not anymore. It is also frustrating for me personally not knowing really what causes this deformation.
In the form of advice I just want to say that I think it shows great courage and strength to be the mother of someone with this condition even if it is only a physical deformity. Also just know that its much more common than you think. My mother had not even heard of it until I was born then began noticing them everywhere. Also do not be afraid to fight insurance companies. You should not have to pay hardly anything for any of Alex's surgeries. Get involved with the Association for Handicapped Children and try getting Alex on both your and your husbands insurance if they are different companies. Don't be afraid to fight for them to pay get your surgeon involved with it also. My family is most definitely blue collar and we have hardly had to spend anything. I hope that what I've said has been of some use whatsoever and do forgive me if i became incoherent at points as it's 3 in the morning. I linked a picture of myself at the bottom incase you were interested in my appearance now that I am pretty much through with my repairitive surgeries

Pictures:
One. (http://pictures.greatestjournal.com/userimg/3176913/424223) Two. (http://pictures.greatestjournal.com/userimg/3176914/424223) Three. (http://gallery.greatestjournal.com/albums/up2/223/434223/001.jpg) Four. (http://gallery.greatestjournal.com/albums/up2/223/434223/Picture%204.jpg.)

[Katrinawitch]

Hi, Emopacman!

Thanks so much for sharing your story! What a strong lady you are (and your pics are gorgeous!) My son Lucas (10 months) just had his palate surgery, and came through it fine. It's so nice to have this place, so parents, kids, teens, etc., have a place to go for support and to share stories! My husband and I often remark what a tough kid he is, and how strong and non-complaining. Hopefully he's so young he won't remember any of the earlier surgeries.

His palate surgery was tougher on us than on him, I think! We just had his follow up visit yesterday with the plastic surgeon, and although there is a fistula (small hole in the palate), it's closing up on its own, and should heal completely within the next couple of months. It did scare the heck out of us last week when we got a good look in his mouth! We were fearing more surgery, but luckily it's something that will fix itself. The toughest thing for Lucas was having his hands wrapped for three weeks. It was so hard on him, and thank goodness yesterday we were given the okay to take them off.

His lip was done over the summer, when he was 3 months old. His scar is still pretty red, but I'm starting to apply Vitamin E to it. He has hear tubes, and we're not sure if we'll have to replace them once they come out. So it seems as though we're done for now. The next major thing he'll have done (barring any problems with the palate which need touching up) will be the bone graft to repair his gum line, which will happen @ 7 years old.

[USAmma]

Hi Anna,

I don't have any info for you but I just wanted to say again how glad I am that you are okay!!! I saw you on TV and I couldn't imagine how bad that accident was until I saw your car. Wow, you are a miracle!

Clefting and other tube issues run in my family. My grandfather and cousin both have the cleft lips and palates. My cousin had several surgeries and for awhile he had a retainer of sorts that would cover the palate so he could swallow better and it wouldn't go up into his sinuses. He also had braces for years, but now he's in his mid 20's and doing really well, and quite handsome. He didn't seem to be affected by the surgeries. He was up and playing basketball a week later. He's now married, very much in love, and has a child. :) I don't have any technical info for you but I wanted to share my cousin's story in hopes that you can see 20 years down the road for your own ds, that he will lead a normal life after all this.

(I myself have a bubble palate that is not fully fused in the center back, but close enough together that it causes no major problems.)

[flaca1]

Hello Everyone,

I came across this website and forum while researching scar revision for people with cleft pallet. I read everyone's posting and I just had to write to give some insight on my experiences with cleft pallet. (I hope this message goes through, this is my first time posting =)

I'm 25 yrs old and was born with a cleft pallet. Not to sure about all the technical names though. I've had about 15 surgeries so far (stopped counting)starting from 2 months old up until a couple of yrs ago. I had surgeries ranging from reconstructive to cosmetic. I've had many reconstruction surgeries to repair a hole on the roof of my mouth, to close the opening of my top lip, bone graph taken from my hip to restore a missing upper jaw area, rhinoplasty, cartilage taken from my earlobe for the tip of my nose, excess fat taken out of the top left area of my lip, EXTENSIVE teeth work (almost 8 yrs with braces on-but believe me it was worth it!) I'm talking some serious "Extreme Makeover" type of surgeries. lol. Oh and I also had to take speech therapy for a couple of years. The docs say to "further" improve my look, I can have jaw relocation surgery which i am NOT doing. I have an underbite but I guess I can live with that. I've researched those type of surgeries and I hear its a big pain. Also, they are now telling me I need braces again because the way my teeth have grown (one tooth grew away from the rest of my teeth), it looks like I have a gap on the side of my mouth so in order to fix that I will need braces again. Not sure to do it or not -still have to think about it. Also they are saying since I have a cleft pallet, that this may be the reason I have been slowly loosing bone on my lower teeth and it looks like my jaws are receeding. Theres nothing much you can do about that though.

I've also done some minor things here and there like injected collagen into my lower left nostril area cause it still looks like I have a gap there. Recently, I've been wanting to lessen the scar between my nose and my upper lip so I've been getting V-Beam laser treatments but they dont seem to help so the doc suggested steriod injection on the actual scar to smooth it out and lessen the appearance. Lets see how that works out. All the docs I've been to say that the scar is really deep and nothing much you can do to drastically reduce it, only minimize it somewhat. My family says you cant really the scar but all my life I've been self conscious about it so I'm trying to do as much as I can to minimize it.

Another reason my mom says that my scar is deep is because when I was little, after my first surgery to repair the lip, while breastfeeding the scar reopened and I needed another surgery to close it again. So mommies, be careful when breastfeeding.

After all my life having to "deal" with this issue, I've come to realize that I was lucky to have the doctors I had. All the doctors, specialists, speech therapists, othodontists, cosmetic surgeons have done a great job.

Annakiss, I read all your postings and believe me i know what you are going through. Even though I am not a mother, I've seen what my mom has gone through with dealing with this. The hospitals, surgeries, everything. My mom used to tell me she thought she did something wrong and that somehow her genes were defective and her heart broke evertime I would go through another surgery or doctor appointment, or when I would cry whenever I felt abnormal or "different" from every kid in school.

Now I realize that this is not a curse, but somewhat of a blessing if you will. Because I've gone through soo much and that has helped me become a stronger person. When times are rough, I just think "I've gone through soo much that this is a piece of cake". Maybe it took so long for me to come in terms with this but maybe it's because I didnt know until I was older that I wasnt the only one in this world born like this. Neither my mom or myself went to group sessions or counselors or anything like that so it was weird for me. Just make sure you explain to your children (when they are old enough)that it is NOT their or their moms fault that they are beautiful no matter what.

Please feel free to contact me with any questions or if you need more information. It's nice to finally talk to people I can relate to =))

Thanks for listening!

[Houdini]

I don't know how active this thread is anymore, but I thought I would drop in and say hello. I have two boys with clefts. Zachary was born with incomplete unilateral cleft lip (palate is fine) and had surgery at three months to repair the lip. He nursed immediately after surgery and never had a problem. He had surgery again at four years old to remove some scar tissue from his lip surgery and to widen his nasal passage. He has been having a lot of issues with his sinuses the last few months, so I am not sure if he needs more work done or not. We go at the end of this month to the craniofacial team and I will talk with his surgeon at that point. I also have Nicholas who was born with complete unilateral cleft lip and complete cleft palate. He had surgery at three months for the lip repair and surgery at one year old for the palate repair. We are suppose to be deciding on surgery at four similar to one Zachary had, but cannot make up our minds (our appt. is the end of May to talk with the team again). He is suppose to have surgery at around eight to do a bone graft from his hip to repair his gumline. So far all teeth are in (one in the palate, but where it should have been without the cleft) and so they are just at a holding pattern right now. He has been in speech for about six months now and is doing great. His speech was always fine and easily understood, he just has some bad cleft habits. Anyone with information about the bone graft surgery and what the recovery is like please feel free to contact me through this thread or PM.

[flaca1]

Hello Houdini!

Welcome! I read your thread asking about the bone graph surgery. First off I have to say that I am surprised that both of your children have a cleft lip- I thought it rarely happens and the chances of both of your children having it was very minimal. Interesting...

I dont know if you read my thread before yours (it was very long i know =) but I had the bone graph surgery when i was about 12. I had bone graph taken from my hip and they put in in my upper right jaw area I had missing.

From what I remember the surgery wasn't that bad. I do remember having 3 months of therapy cause I was having trouble walking after that. Also, I couldnt really eat a whole lot after until my jaw healed-which was very quick by the way. That didnt hurt at all. The scar on my hip is kinda big but then again this was more than 10 years ago so I can imagine the scars for that type of surgery are minimal these days.

I do believe this surgery is worth it because my smile is SOOO much better than it was when I was 12. The healing process of the jaw was quick , although not as quick for the hip. But in the long run this was definitely worth it.

Let me know if you have anymore questions. Feel free to ask..

Flaca1

[EXOLAX]

Women who drink and smoke throughout their pregnancies have babies who are fine. I drank and smoked before I knew I was pregnant (because I wasn't planning a pregnancy) and I feel like I'm forever going to be paying for that. Or worse yet, my son is paying for it. And I keep trying to tell others and I suppose to tell myself, that that didn't necessarily cause the defect, and I know that that's true. I understand that not having a daily doseage of folic acid in my diet didn't cause the defect, but I also know that it could have helped to prevent it.

Annakiss,
I am responding to an old post here so bear with me if this all old hat by now. First off I know first hand all of the feelings you have expressed here. I would like to point out that there is no link between folic acid and clefting, for that matter there is ONLY a link between folic acid and neural tube defects (such as spina bifida) and none to any other kind of deformity.

Our eldest was born with a cleft lip and aveolar ridge (gum line) as well as congenital neurologic strabismus and environmental allergies. She's almost 5 and has had 4 surgeries (all before she was 2). I have dealt with feelings of guilt since she was born. We didn't see her cleft, even though is was a surprise to us, but saw it on the faces of people when they first saw her which is how we first came to really recognise it. I remember being in the geneticists office and asking her why this happened, and how we can prevent it from happening again. Her response was to take good care of myself during pegnancy. Now, I believe I could not have taken better care of myself while pg (took prenates, no medications, no alcohol, no caffeine, no nicotene etc.. I ate organic, I tracked my daily intake of vegetables and fruits (varrying colors and above and below ground) and made sure every day that I had atleast 100 grams of protein before dinner. I lost it with the geneticist and mused over all those women who have 'healthy' babies who eat fast food, drink coffee and alcohol, smoke cigarettes or even worse. The geneticist offered up that 1) sometimes things just happen in nature and 2) All those things I did will help our DD developmentally in so many ways. It didn't offer me much comfort at that time.

I did have a mom from my DD's class ask if I took prenatal vitamins during my pregnancy and I was floored. First because of the misnomer over th elink between clefting and folic acid and secondly because she was blatantly accusing me of not doing enough and in effect causing this to happen to my child. Ignorance is everywhere. It made me realise that I still am not over my guilt issues in spite of having another child after her who is not cleft affected (and during her pregnancy I had such severe all day morning sickness I could barely eat at all, let alone track what I was eating daily).

Annakiss, do you go to a craniofacial clinic? We are geering up for our DD's next appt.. We will find out then if her PS believes another revision would benefit her. We are trying not to think about it because we don't know what he will determine but we are already pretty steadfast against it. We think she is beautiful and can't imagine telling her that she has to go through a painful surgery and recovery to repair something that we don't think needs changed. I have spoken with adults with clefts though and each and every one says to do whatever we can as young as possible inspite of our parental concerns.

She has issues with her teeth as well and the ortho's don't know what is going on. She has a tooth where one should not be and no one knows yet if it is an ectra tooth or a permanent one that came down too early in the gap left by the cleft in her AR. The waiting game is frustrating but it seems we all live in a 'wait and see' world. Clefting is so variable that no one can tell in any individual case what is going to happen.

I saw that you gave your name to the nurses for other parents and I hope you did receive some calls. We started a support group through our craniofacial center for that exact purpose and it was wonderful. I'd take my daughter and a cleft bear from Gund to the clinic and meet with new families. It was helpful for them and me as well. I think it's also good for DD to see other CA children so she doesn't feel so isolated.

How have other people handled clefts and revisions as your children grew? I'd love to hear some recent experiences with older children.

[the_queen]

My 4 yr old DD was born with bilateril cleft lip and gum. Her palate was unaffected, and we managed to breastfeed for 14 weeks until her first surgery. The next two weeks were expressing-hell for me (I was 22 yrs old, marriage was rocky to begin with, as-yet-undiagnosed PND) and at 17 weeks she was exclusively on formula :( At 11 months she had another surgery because somehow her gum had been put in UPSIDE DOWN :angry and her top teeth started growing out through her NOSTRILS :angry :angry :angry :angry and then the anaesthetist OD'd her on morpheine as the operation was finishing :angry :angry :angry :angry So basically I wasn't too happy about that surgery.... But all ended up ok, and she has been pretty much problem-free since then.
She has just had her third surgery (age 4.5 yrs). It was basically "cosmetic" (they offered it to us, to "tidy up" the bigger scar and also the flared right nostril) but also she had a couple of tiny fistula's in her nostril floor which tended to leak any fluid or soft food. I didn't want that for her when she starts school (August this year).

I thought that surgery would be easier for her as an older child - I was SO wrong. She wouldn't let us clean her wound, she wouldn't take her paracetomol (which was fine by me, I don't ever give her medicine unless she's extremely ill - but the nurses were having conniptions LOL "she has to take it!!!!" I'm like, "why? If she doesn't take it, she'll be in pain a little, but then perhaps she will take it then! I'm not forcing it down her throat!!!") And she wouldn't let them take her stitches out. So they had to anaesthetise her again, which she fought, screaming and kicking (meanwhile I'm trying desperately not to burst into tears and run out of the theatre). And she hasn't let me clean it since the stitches have been out (I've had to teach her how to clean it herself, and apply the chloramphenicol).

She now says she is NOT having the bone graft (due when she's 8 or 9) because "I might wake up before they've finished and it will hurt me" so now I'm stressing out that perhaps she was aware or awake during this recent surgery?!!

Good to have a bit of a "cleft kids support group" on MDC :thumb I'm an Aussie, so our surgery schedules etc are probably different to y'alls.

[PuppyFluffer]

Any of you experienced folks want to offer some advice here:
http://www.mothering.com/discussions/showthread.php?t=419736