Cleft Lip and/or Palette

**Pretty Butterfly** · October 17th, 2007, 04:48 PM

Been running around BB for a couple of days and couldn't find a thread on clefts so thought I would start one!! It is one of the most common birth defects, affecting almost 1 in 500 births. Although cosmetically it can be fixed, many also have underliying problems or syndromes. My 5th baby, Kane has a cleft lip, gum and palate. He is only 3 months so hopefully i'm pretty up to date on most info and would love to hear from anyone who has clefts in their family. The doctors are pretty sure ours isn't heriditory, but a lot times it can be.

Kane is an extradinary baby and the little love of my life. It's actually a shame his face has to change, cause I love it how it is!! Although having a cleft obviously isn't very practical!!

Many people say how can you be happy and laugh with what is wrong with your son?? Well my son is healthy, and many people have very sick little ones, so I consider myself lucky to have my son just how he was meant to be. And some days if you don't laugh, you'll cry!!

Sorry the long post, could seriously talk about him all day!!

Will post again later with all the practacalities eg feeding, surgeries, speech etc.....

**srv** · October 18th, 2007, 11:33 AM

Hi. My son is nearly 6 months old and also has a cleft lip and palate. We found out during the 20 week US and got to meet our cleft team...plastic surgeon and speech path before he was born. Also gave the whole family the chance to look at lots of photos to prepare themselves. They also think ours is not hereditary. He has no other underlying problems.
When we found out we were devastated but now I can't believe we thought it was such a big deal. He is the most amazing little boy in the world. We also loved his face the way it was..cleft babies have the most beautiful smiles I have ever seen. Their whole mouth opens up and their face just lights up. I say how his face was as he had his lip repair done when he was 3 months. He now looks "normal" whatever that means. We were so nervous before the operation cause we loved him the way he was, he was happy and healthy and we were sending him off for an anaesthatic at 3 months of age. He looked so different after..it took a few weeks before he looked like my boy again.

You're right, poeple don't understand unless they've been in the situation. When we first found out about the cleft I thought I would be counting down the days till the op, but as it got closer I got more and more nervous. It was hard when people came to see him early on and never said he was beautiful but we could always see how special he was. They always thought we would be hanging out for his face to look "normal" (I hate using that word because to us he was so gorgeous) but we really loved his face th way it was. We had heard that for manyparents the hardest part of this whole thing is dealing with your babys face changing so much. We didn't understand till we got to that point. We had spent 3 months bonding with our baby and the face he was born with and that was going to change.

When we first found out about it and were trying to deal with it eg "why did this happen to us?" my SIL said, "because he chose you, he knew what special parents you would be to him"

Actually I have to go feed him but I will also write more too as I would also like people to know more about clefts. Will write more after the feed.

When is your lip op?

**Pretty Butterfly** · October 18th, 2007, 02:06 PM

So happy to from someone in the same boat!! Kanes op is in 5 weeks and I'm dreading it. As much as he needs it, I know how much I'll miss his face!! Our other children cant understand why he has to change at all. They've all taken photos to school to show off their special bub!!

I too was devastated when we found out at our 19 wk ultrasound. Cried for agggeeesss!Now I cant beleive what a big deal it ISN"T!! We never said why us?? I wondered why this little baby?? He didnt do anything!! Why inflict him with such a hideous face?? I often cried to DH and said why cant it happen to me instead of him?? But I now know Kane is just SO special, and definatly not hideous!! His face lights up the place everywhere we go!!

Just got home from being out, so need to go pump. Will be back soon also!!!!

**srv** · October 18th, 2007, 02:35 PM

I saw a photo of your boy in your photos and he is GORGEOUS. Great smile. I don't have any photos up but at some stage I'll try to send you before and after photos. My boys name is Stephen.
Good luck with the lip op. For us the 1st day was awful but even that first night he was slowly trying out his new smile. He took a bit of milk with a syringe the 1st day. By the next day he was bottle feeding and he went home after 3 nights. I think it took about 2 weeks in total to really get back to his normal self. I really missed his face but now I love his new one just as much! And he still opens his whole mouth to smile which is beautiful. Now we've got his palate op in about 6 weeks which I am really dreading. Oh he also got ear tubes in with his 1st op.
I have to say even though it took a while to get used to his new face, the surgeon did a fantastic job. The result is brilliant. People can barely tell. The scar is fading well. His nose is slightly asymmetrical, but hey, he's a boy, he's bound to break his nose sometime

He feeds really well with the squeeze bottles and I reckon he's pushing 8 kilos. btw well done to still be going with the expressing and bottle feeding. I did it for 2-3 months but got lots and lots of mastitis and ended up changing to FF. It is masses of work so you are doing fantastically well. How is Kane doing? I don't know any other cleft mums. As much support as we have from family and friends, you really can't truly "get it" until you have a cleft baby.
Just wondering (As for me Stephen is my first bub) do you find any difference between him and your other kids because of what he has to go through? I feel that Steve will always be that little bit extra special IYKWIM.
Kids are amazing aren't they. They just don't notice differences. Steve has a 2.5 year old cousin who never ever mentioned his cleft nor ever mentioned that his face changed after the op. He's just "Cousin Seven" Shows what an infuence parents and peers have on these innocent minds.

**Pretty Butterfly** · October 18th, 2007, 03:08 PM

The expressing is really hard work, and he still has a FF each day cause I just cant get enough!! I'm on a heap of herbs and pump round the clock. Think I'll be giving it up soon too. Kane is really no different to my other kids, but I have admitted that he holds an extra peice of my heart!! I cant help it, he's just got that little something that makes me extra protective and a little more in love!!

My 19 mnth old has started noticing the cleft, putting his finger in it and saying "bubby sore". Its really cute, but he'll wonder where its gone!! My 7 yr old was worried people would laugh at Kane, but has now seen how everyone thinks heS cute. He likes strangers asking about his brother now, cause he launches into a long convo about clefts with them!!

Kane is just on 7kg now!! But he was 4.01kg born so got a good start!! Will post more pics when i get around to it. Can't wait to see Steven, little clefties are just adorable!!!

**Pretty Butterfly** · October 30th, 2007, 03:34 PM

Well I guess being in the special needs section, I should explain What is a cleft? At about 6-8 wks gestation, the bones and skin form over the face. A cleft is a sort of defect where that hasn't happened correctly. There are all sorts of clefting. Unilateral -one sided-
Bilateral - two sided where there is a gap on both sides of the nostril-
Complete - goes up the nose-
Incomplete - only goes up a small way, looks like thieir lip is curled up-
It can also affect the gum and /or soft and hard palate ( roof of mouth).Kane as you can see has a complete unilateral cleft of the lip, gum and palate. The biggest concern when first born is feeding. Breastfeeding a cleft palate is practically impossable as they have no suction.

There are special bottles that need to be taught how to use and bub how to drink from!! Once that hurdle is over, it's on to operations. I'll post about those too later on.
You may of seen a cleft affected person and not realised!! A small thin scar from lip up to nose is all that you can see in most cases. Think of gorgeous Joquin Pheonix (sp?) and thats how my little man may look one day!!!! I hope so!!!

**Pretty Butterfly** · November 6th, 2007, 09:42 AM

Well Kanes op is 3 weeks away now... This first op will bring his lip down from up in his nose, and bring his nose over to the middle. Can't say i'm looking forward to it AT ALL!!

I love him how he is. Next op at 18 mnths will repair the cleft in his palate. Continual ops from age 5 through to adulthood to make a gum and do LOTS of dental work. He'll have good teeth because most of them will be permanet screw ins!!

To give him a gum, they take bone from his hip and place it in the gum line. I asked the doc to use my hip bone to save bubba having it done and he said no

I just may the most neurotic mum he's had!!!

Give everyone a big "wide smile" for Cleft Awareness Week. Even those who don't deserve it. It makes YOU feel good!!!

**srv** · November 6th, 2007, 03:23 PM

Lots of great info there from Purple Mama. My little man had had his lip operation and you really can't tell apart from a little scar which has already faded heaps in the last 3 months. My man has his palate op in exactly 3 weeks.
We have started solids and were told its exactly the same as with any other bub except messier and to expect food to not only be spat out but also to come out through his nose. Actually Stephen is pretty good and we rarely get stuff coming out the nose..

Other famous people with clefts include the redhead from the Pussycat Dolls..Carmine Bachar I think her name is and Mark Hamil - Luke Skywalker from Star Wars for those who don't know who he is.

**Pretty Butterfly** · November 7th, 2007, 06:32 AM

Good to hear from you!! So glad to hear the solids are going well!! Got a prescription from the doc for Motilium and bub is back on EBM full time!! There are heaps of famous people with clefts i've been told, I just didn't know who!! All the best for palate repair!!!

**srv** · November 7th, 2007, 02:49 PM

Thanks, good luck for the lip repair. I know people have probably told you to prepare yourself for the shock of your boy looking so different. I was stunned how different Stephen looked after the op. It took at least 2 weeks for me to get used to it. The first day was awful. He was pretty sore and unsettled and was very swollen but by the next day he really picked up and even took 200mls from the bottle in 1 go and it was all uphill from there really.

Well done on still going with EBM. I am in awe of you. Such a fantastic effort.

I was interested that Kane is having his palate repair at 18 months, Stephen will be just under 7 months for his. It's amazing how everyone does things slightly different. btw do you use normal teats or special teats with the squeeze bottles. We use normal ones (on the advice of our speech path) but I've heard of some using special teats.
Will Kane have ear tubes put in? Stephen's ENT examined him in theatre and as he had fluid in his ears put the tubes in when his lip was done. We actually just had an ENT check up today and tubes are still in and ears are looking good so we don't need another lot in yet. We have a formal hearing test just after the palate op but I have no doubts about his hearing.

**Pretty Butterfly** · November 8th, 2007, 06:53 AM

A lady at my cleft group showed me photos of her son straight after his lip op.... and i'm glad she did. He looked awlful!! So i'm somewhat prepared.Still scared sh#@less though!!
Kanes cleft palate is very narrow, and will move a little closer together as he gets older, so our surgeon wont touch it till his older. He went over to the states to lecture on clefts and learn the latest techniques. So I hope his right!! He is the head childrens plastic surgeon so I hope so!! I wrote in another thread somewhere that our surgeon is the one that done the plastic surgery on little Sophie who was run over twice in Sydney, so wer'e pretty happy with him!!
Kane hasn't had any ear infections, and we had a diagnostic hearing test done at 10 weeks that showed perfect hearing, but he does have fluid build up. Our doc said he'll have a look pre-surgery and decide then. Since his only on EBM he might not have to.
Kane uses the special bottle and teats, but on occasion has used a regular bottle. The special teats are good because he has to roll his tongue up it to get the milk out himself. It's good for sucking and speech practice.

I'm so glad little Stephen is going well!! Off to some engagements for National Cleft Awareness Week... I'll post again afterwards!! I'm excited, it's both our little boys first one!!!

**srv** · November 8th, 2007, 11:04 AM

You're lucky to have access to cleft groups etc. Cleftpals is pretty much non functioning in SA. In hospital when he was born the midwives finally tracked someone down who was vaguely linked to them who took our details and said they'd contact us and send us some info etc but we never heard from them again.
I'm sure your surgeon is excellent, it just was interesting to me that they do things so differently. Stephens cleft palate is pretty wide so even though he does well with the squeeze bottles, he wouldn't be able to suck hard enough to use a normal bottle. Our surgeon actually just got an OAM this year becaue he donates his time every year to go over to Indonesia and East Timor and repair as many clefts as he can free of charge. So he does people of all different ages becaue they just don't have the money and facilities to do it. He has some amazing stories of his work over there and some fascinating photos of before and after photos there.

I think you're lucky to not have to do the palate till he's a bit older. It's a little easier to explain what is going on to an older child. I'm dreading the palate op so much, I hear it's pretty brutal on the kids. We really hope he's over it and back to his normal slef by christmas.
With Stephen I think his speech would be too affected if they waited too long cause it is so wide. Even though he vocalises really well so far.
Anyway hope you had a good day with your functions. We don't have anything

**Pretty Butterfly** · November 14th, 2007, 07:59 AM

Finding clefts groups is really hard, which i'm really surprised at. Everyone seems to know someone that has/had one!! It's so common. People need to get together more. We dont sit around talking "cleft" all day. We have fun!!
Our surgeon goes over seas once a year too!! It's amazing how compassinate doctors that perform surgery on babies can be!! I've seen photos of the palate op and it's not pretty. The inside of their mouths look awlful and really sore. I'm dreading that one too.
Good luck and big hugs for Stephen.!!!!

**Phteven** · November 14th, 2007, 01:02 PM

Thanks for sharing Jodie and SRV. I've learnt heaps.
Good luck with the ops in 3 weeks.
BTW Kane's photo in your ticker is great - he looks so cheerful

**MistyFying** · November 14th, 2007, 02:44 PM

Yes Jodie Kane has a very cheeky smile with that gorgeous dimple in his cheek too. I hope all goes well with his surgery

**Pretty Butterfly** · November 22nd, 2007, 07:29 AM

Thanks guys. It's next week so i'm just starting to stress.Got all the other kids sorted to stay here, were just taking the 2 babies with us. I'm taking massive amounts of photos, cause soon it will be all gone. I put up a dark blue sheet and took "studio" shots. I just cant get used to the fact that my angel will look different to how he does now. Very strange!

**srv** · November 22nd, 2007, 03:03 PM

Thanks. Yep, Stephens op is next Tuesday and I'm getting nervous too. I can't wait till it's over. Good luck with Kane's op. Give him a big hug for me. I remember when the nurse took Stephen to theatre he looked at us and gave us one last "wide smile" and we both nearly cried. He'll look fantastic after, a real little spunk (as he is now!) And you'll always have heaps of photos and memories of his cleft and he'll know how much you love him and how much you loved his cleft.

(But I do know exactly how you feel)