Cleft Lip and/or Palette

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

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?

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!!!!

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.

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!!:heartbeat: 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!!:lol:

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!!!

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!!! :lol:

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!!:cry: 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!!:D
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:rolleyes: 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!!!:D

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.

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!!!

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.

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!!!

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:(

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.!!!!

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 :)

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

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!

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)

just added some photos of stephen. the post op photo is about 2 months post lip repair.

I don't have much to offer as a parent but I just thought I'd pop in and say hi... I had a large cleft palate (not lip) and I'm fully functioning, successful individual now (not that you would expect otherwise ;))

It was years and years of ops (a lot to do also with the fact that my ears got messed up as well from missing piping and some other jaw issues). When it was 'over' was a bit odd. I didn't know what to do and felt I could turn into a hypochondriac just to keep seeing doctors as it did become a huge part of my life.

I've moved on from that now and feel very blessed by the experience I've had- it's made me a much richer, empathic person and I wouldn't change it for the world.

All the best to all of you and your gorgeous children. You sound like beautiful, caring parents :)

srv, what a gorgeous little man Stephen is.

Stephen is just gorgeous!! His after shots are just fantastic from such a wide cleft. I only hope Kane looks as good!!!

Thanks. We think he's pretty cute! Can you believe he's had 3 haircuts already.
Ren, so good to hear from you. It's pretty daunting as a parent to find out before your child is born that you're in for a pretty long and tough journey of repeated ops and lots of follow up. Great to hear from someone who's been through it all. It sometimes scares me how much he will have to go through but he's such a brave and strong little man, I know he'll cope fine! His mum on the other hand......:)

Jodie, I know he will. These surgeons are amazing.

Jodie, sometimes I now look back at his cleft photos and can't believe how wide it was. After we got used to it I never really noticed it but now its repaired it is really amazing looking back at his pre repair photos.
If you have a swing or something that he's used to I suggest you take it with you to the hospital. It was such a life saver for me. He had most of his day sleeps in it which gave me a bit of rest. I also took some of his favourite toys and books. Also I found the arm splints would keep slipping off if they were put on over clothes so we used lots of short sleeved or sleeveless tops or even just singlets if its hot. When we got home if the splints slipped he was able to bend his arm and then whack himself in the nose with the splints which caused massive middle of the night tears so make sure they're nice and secure and can't slip. Also tops that button up or have wide necks are better so you can get them on without hurting his nose.
Their arms get really sweaty under the splints so give him lots of breaks from the splints if you're allowed to. We were able to take them off as long as we held him and made sure he kept his hands away from his face .
If I think of any more tips for the lip op I'll post them.
Can't wait to see how Kane looks after his repair.

good luck little kane!! can't wait to see your beautiful boy
stephen is gorgeous

Thanks hon, I didn't think of those things!! To preoccupied stressing!! i'll show hubby these posts so he can help me pack. It's annoying having to go so far- 6hrs- away from everyone. I'll be strong for Kane, but already know i'm gonna fall apart bad when he goes in... i'm too soft. Zavier had a MRI at 6 months and I was a basket case the whole time he was outta my arms.

Hi Jodie, good luck for this week. Hope it all goes well.
We're up for tomorrow. Can't wait till it's all over and he's back to his normal self.

Well here is a brief catchup!! Kane's op went FABULOUS and all is well. He is completely back to normal. The surgeon did a perfect job. Our hurdle now is solids, and trying not to get it up into his cleft palate!! Seeing the surgeon in 2 weeks, so we'll discuss then and start up with some rice cereal. Kane has had NO ear infections, which is practically unheard with little cleft bubbas, and I put that down to having EBM!! So he also did'nt get gromits with his surgery. YAY!! Next surgery is for cleft palate, and I'm not looking forward to it!! Its supposed to be pretty nasty.

So fingers crossed Kane stays as well as he is, and mummy here makes it through another day!! srv, hope all is well with little Stephen and his palate is healing well!!!

Hi Jodie,

That is such great news! Well done Kane :clap: I found this thread a few days ago and have been wondering how you guys have been getting on. It must be so stressful to see your little guy going into surgery and such a huge relief when he comes back alright. Bet you were doing these ones! :dance:

I am a bit like Ren, I can't offer you any experience as a parent of a child with a cleft, but I have a bilateral cleft lip and palate myself (that was considered 'big'). I don't think you can stereotype cleft kids - they have more in common with so called 'normal' kids in how unique and different they are than they have in common with each other IFKWIM? As an example, I didn't get ear infections or need grommits either. In fact, I didn't have any "treatment" between the age of 1 year and 10 yrs (when I got braces). Everyone is different.....

Don't worry too much about the solids either mate. I am sure he will work it out. Apparently after a couple of days I started to pushed all my food to the side of my mouth and then down ........

Take care and good luck!

srv - hope Stephen is doing just as well :D

Its great to hear from someone thats been there!! Sounds like you has no trouble either, thats awesome!! I guess maybe they try to prepare you for the worst? I hope Kanes solids go as well as you did too, he's SO waiting for food!! We'll find out next week and ill be back to post then!

They do try to prepare you for the most difficult scenario, just in case it actually happens, although none of it is very nice or easy. All you can do is take each step and each stage one at a time. Don't think too far ahead - the future is too hard to predict (for any of us really). It sounds like you are doing a fantastic job btw! It is tough for him but I reckon worse for the parents - you guys are the ones who will remember this period and the worry/stress - take heart that he will never actually remember this time.

Take care, :)

Hello there

I've just returned from hospital where I gave birth to my first born son - Liam. He was born on 17 April 2008 at the Flinders Medical Centre in Adelaide.

He wouldn't feed after birth and a Paed did a 'check' and discovered the undiagnosed cleft palate (only palate - not lip). He has a bilateral cleft of the hard palate. We're not yet completely sure about the soft palate, but the speech therapist didn't think there was any issue with his soft palate.

It was a bit of a shock initially, but he is such a beautiful and special little man to us that his 'specialness' only increases our love for him.

The staff at the FMC were absolutely fantastic and we were so well supported and encouraged there that Liam was only in hospital for 5 days. He had the nasal tube out after day 3 as he had figured out the bottle feeding thing pretty quickly. I'm expressing milk for him, but he still needs a little bit of formula until I get myself all sorted out. I've only managed to get a breast pump today (what a drama!) and now can attempt to provide all his feeds, but am not sure how it'll go. Will give it my best shot!!

It's lovely to hear that there are other members on BB who have 'special' babies. Even though my little prince seems to have less issues to deal with than your precious bundles, I still hope we can support each other.

Look forward to connecting with you all as our babies grow though their challenges!

Well hello there, little cleft mummy!!! Congratulations on the birth of little Liam!!:dance:

I have also found that Kane is just that little bit more special in certain ways!!
Pumping full time for your bub will be VERY hard work, and good on you for trying!!:clap: I have pumped for Kane for 9 months, and it can get extremely difficult, and you will most likely have supply issues. I have only kept my supply up with medication, but it worked a treat!!

Welcome to your journey with a little cleftie... It is a very loving and rewarding one hon!!:hug:

Thank you PurpleMama

I'm having challenges with the pumping but my supply seems to be good. I've only been home from hossy for 2 days, so it's hard to tell yet.

Seeing as you've done this, can you answer me something? What did you do when you would be out all day? Did you hand pump while you were out? I'm using an electric one because the manual one I bought doesn't seem to work very well. I might give it another go now that my milk is truly coming in (got 100 mls each breast this arvo!) as this may be the only way to go :( I have had to sup him on formula when the breast milk isn't there, but I'm learning to accept this..

He went for his full blown hearing test today - but we couldn't finish it as he woke up :) - we'll finish it off next Wednesday. I'm happy to report though that he had a full pass on his left ear which means full hearing there. His right needed further testing but it does have fluid - I'm hoping this is related to a little snuffle he has at the moment and will pass.. only time will tell!

Thanks for your welcome and I'm sure the few of us cleftie mummies will be a great support to each other!

I carried my pump with me!! It is a double electric, and is my worst/best friend!!:cryinglaugh: If at a house, I just went to room and used the power point. If in town, most mothers rooms have power points. But to be honest I rarely left the house at pump time. I pumped before i left, and jumped back on when I got home. I didn't have supply issues till 10 weeks. Once the hormones settled down, and there was no baby suckling, it went really fast. I hope you do better than me, but the meds were great!!!

Kane has also failed hearing tests. His right is fine, but in his left ear he has failed them all :( We go back to Sydney in a few weeks for ANOTHER test!! I nearly live there now!!:lol:

Good luck with your bubbas hearing retest!!! And it is amazing how much support you can get from other cleft mummies!!!:hug:

Well good news! Liam seems to have full hearing! He has some fluid in one ear so they are referring us to an Ear/Nose/Throat Dr to get it checked out (in case it's something serious), but otherwise he seems normally developed in the ears! :clap:

I'm curious to get your advice on one thing though... when we were filling in the 'baby bonus' form for Centrelink, it asks "was your baby born with a disability?". I don't consider the cleft palate a disability, but do Centrelink? What did you guys do with this?

When I get around to it, I'll ring them and ask, but I was curious what you guys thought.


Anyway, we're starting to settle into a routine at home now and he's such a happy little man... I love him to bits! :lol:

I'm SO happy he is doing so well!!:dance: With centrelink, we have filled out every form they have, and there is no difference to our bubbas from the others. There is no financial help as they are not "bad enough". We can claim IPTAS and that is it, but it is a help none the less!:D

keep us posted on little bubbas progress... they are very special aren't they..;);)

Hey there clefty mummies!

Just an update - Liam's doing really well (new photo posted in my Gallery) and doesn't use a feeding plate anymore - he's even worked out the bottle so we don't have to 'squirt' it in, he sucks it himself! Clever little man!

However, I'm having some major supply issues with my EBM so that I'm not really keeping up. He's on at least one ff a day just so we can keep the supplies up. I've tried some meds from the Docs, but he didn't give me a repeat, so I'm out and will see my Ob on Tuesday to get more.

Have considered giving up the pumping because it's such hard work and if my supplies don't improve, I think I'll dry up pretty soon! Funnily enough, it's not the pumping that bothers me but the washing up we have to do all the time... my hands are sooo dry and it takes so much time every day! Stupidly, even if I changed to ff, there'd still be the washing up - just not the pumping bits! Der!

Anyway, just wanted to 'check in' and say G'day. How are your little fellas doing??

SRV - you're in SA? I'm in Murray Bridge - where are you located? I've heard there's a support group - Cleft_SA, but haven't chased it up yet.

Hello everyone! Came across this whilst searching for information and advice on Cleft Babies! Our unborn baby is due June 17th which is only 10 days away and was diagnosed with bilateral cleft lip and palate at our 20 week scan! So we have known for awhile and had time to get our heads around the whole thing!
I guess I just wanted to touch base here and let you know who I am because I am sure I will be back with loads of questions once bubba is here! I have had help and advice from Cleftpals but needed a forum like this where I can just jump on at any time and ask questions or just debrief how I am feeling.
I am getting nervous now it is getting closer but excited at the same time!
Anyway I will be back.......
Thanks!! xoxoxoxo

Welcome Leesha!

Everyone is a great support on here so I'm sure you will feel encouraged & helped.

Good wishes for the birth and we look forward to photos of your little bundle!