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Shells View Drop Down
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    Posted: 11 December 2008 at 7:48pm
Hi

I've found out at my 20 week scan today that my little girl has a cleft palate, I'm feeling a bit lost right now about everything, and am wondering if there is anyone else out there who has been through or is going through the same thing.

Thanks

Shelley
Shelley :)

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jack_&_charli View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jack_&_charli Quote  Post ReplyReply Direct Link To This Post Posted: 11 December 2008 at 7:52pm
big hugs hun!

you should flick my2angels a pm, her boy kobe had a cleft palate and you wouldn't know it when you look at him now

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mum2paris View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mum2paris Quote  Post ReplyReply Direct Link To This Post Posted: 11 December 2008 at 8:12pm
Hi there, first of all congrats on finding out you are having a girl - they are heaps of fun!!!

I haven't had first hand experience of my own child having this, but i have worked with babies with clefts a fair bit in the neonatal unit.

It really all depends alot on whether of course baby also has a cleft lip, whether it's partial or full, soft or hard palate etc.

Usually in terms of feeding it also depends alot on the extent, some babies breastfeed woderfully well with just a few bits of help here and there to find a latch that works well, or with the help of a sheild, some may need a few tube feeds to get the hang of it, others may need to use special bottles etc like "haberman" teats that help to bridge the gap left by the cleft to help them seal and drink. Mainly most of the issues are around feeding.   

In terms of repair etc, it depends again on the full extent of it which usually will be found out at birth, and there is usually certain time intervals at which they do repairs etc.

Good luck with your beautiful baby girl. The last wee girl i looked after was a year ago, she had a cleft lip and palate, and she's since had surgery and is even more gorgeous, you can hardly see the repair, she's thriving so much.

good luck
Janine and her 2 cool chicks, Paris & Ayja

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Post Options Post Options   Thanks (0) Thanks(0)   Quote ShellandBella Quote  Post ReplyReply Direct Link To This Post Posted: 11 December 2008 at 8:36pm
Hey there Shelley. Don't despair, as cleft palates can be surgically repaired and like mum2paris said, it sort of depends if it is just the lip or involves the hard and soft palate, if its one side/both sides etc.

I work (well I'm on mat leave now) in the plastics theatre, and we usually do clefts once every fortnight. Usually the first op is done at 3 months (the lip), then the palate at 9 months and any revisions after that. Sometimes further down the track as your baby grows, they may need some revisions as the palate and teeth develop and sometimes breathing can be affected, but again, depends on what structures are involved.

You will be referred to the cleft team where you are who includes surgeons, speech and language therapists, nutritionists, nurses, etc. so you'll be well looked after and they will all have expertise in the area.

I know its tough when you find your bubs isn't 'perfect' but see if you can talk to some other families that have gone through the same thing to give you another perspective.


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my2angels View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote my2angels Quote  Post ReplyReply Direct Link To This Post Posted: 11 December 2008 at 9:07pm
Oh Shell do you work with Jesse??????

Yep my son had a cleft. Im guessing if you have found out at your 20 weeks scan there is a possiblity that they wont know for sure if its the cleft lip only or lip and palate, both very different and I know we were told they couldnt tell if the palate was included until Kobe was born and my best friend whos wee girl had the lip and palate was the same, she had to wait.
Any questions fire away, PM me if you like but honestly dont stress or worry. they repair it so you wouldnt even know (I can show you photos if you like) and if its the palate as well then there are ways to manage that. There are all sorts of tools to help feed baby and the ops are done while they are little, the lip around 4 months and palate around 8mth -12mnths from memory. Of all the problems to have cleft is probably the best because its easy fixed. You just have to get over the look of it and not let other peoples reactions bother you. I was really worried about this before he was born, thinking my child is going to be ugly but ones they are here you dont even notice and the mothers protective instinct really comes out if you see people looking at them sideways. Honestly it will be sweet, dont stress about it just look forward to having your baby.

Edited by my2angels
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my2angels View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote my2angels Quote  Post ReplyReply Direct Link To This Post Posted: 11 December 2008 at 9:10pm
Oh and also it can be good in the future cos Kobe will get a nose job when he is 18 if he wants it plus if he needs braces it will be paid for and we have regular check ups and things like speech therapy and grommets dont take long to get if you are through the cleft clinic rather than general waiting list
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fire_engine Quote  Post ReplyReply Direct Link To This Post Posted: 12 December 2008 at 3:27pm
Have a chat to your MW and see if you can get an early referral to the Hamilton cleft team - they include a speech therapist and dietician who can talk to you about some of things that might be a bit tricky till the surgery is done and can give you more information about what will happen after your baby is born.

The Cleft Lip and Palate support group - website is also a fantastic source of info and support.

It must have been a real shock for you. I hope you are able to get some information and support that will help.
Mum to two wee boys
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Shells View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shells Quote  Post ReplyReply Direct Link To This Post Posted: 12 December 2008 at 4:05pm
Thanks for the support everyone it's been a pretty rough night and day. We found out this morning that she has a cleft lip and it also affects the gum, we have to go back at 26 weeks to find out more about how far back into the hard and soft palate it goes, with a 3d scan. It's going to be tough waiting for that 6 weeks!
I didn't get any sleep last night I just had so much going on in my head, I realise that it isn't the end of the world, and we are going to cope, I'm just trying to get my head around the fact that my poor little girl is going to need surgery, she's going to have a bit of a tough start. I'm worried about how this will affect Ollie, he's so young but he knows that somethings wrong. I'm not going to be able to breast feed, she isn't going to be what every one would deem as 'perfect' and I just feel this overwhelming grief over my lost expectations of having a new born again. It's been a real emotional rollercoaster I seem to feel fine and able to get on with things one minute and then it feels like things are crashing down around me.

I know it will get better. I have a fantastic husband who has been so brilliant and a gorgeous son who has been giving me losts of lovely cuddles. I just feel so guilty we've told a few people today and they've all been so brilliant, but it's been one of the hardest things I think I've had to do.

Edited by Shells
Shelley :)

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EmDee View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EmDee Quote  Post ReplyReply Direct Link To This Post Posted: 12 December 2008 at 10:21pm
Shelley

I don't have any advice but wanted to let you know I'm thinking of you
DS 8
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EmDee View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EmDee Quote  Post ReplyReply Direct Link To This Post Posted: 12 December 2008 at 10:22pm
Oh and congratulations on your wee girl
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KitKat Quote  Post ReplyReply Direct Link To This Post Posted: 13 December 2008 at 3:20pm
Hey shells- I just want to give you a big    Thinking of you... xxxxx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote my2angels Quote  Post ReplyReply Direct Link To This Post Posted: 14 December 2008 at 5:36pm
Yes its going to be rough and people do stare but just remember that the lip will be repaired at about 4 months and you cant see the palate (if that is effected) and after the lip repair she will look totally normal. You probably can still breastfeed if you want to, they come and show you how to do it. And it doesnt need to cloud your excitement of her arrival if you dont let it, she will still be perfect to you and Ollie probably wont even realise that its a big deal. My neices who were between 2-4yrs didnt even think of him as different and told people he had a 'sore lip'

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Post Options Post Options   Thanks (0) Thanks(0)   Quote BettyBoop Quote  Post ReplyReply Direct Link To This Post Posted: 19 December 2008 at 8:35pm
Hi Shells,

My youngest daughter Isabelle is 6 months old and has a bilateral cleft lip and palate. We found out at our 20 week scan too. Isabelle has just had her first surgery at 5 months at Waikato hosp. We can meet up when we are next over in Feb for a clinic appt if you want.    We are having our first Tauranga cleft Lip and Palate get together tomorrow at Memorial park at 11 for all the families to hang out. Susan of the CLEFT ORG is brilliant to talk to as well on 0800 4 CLEFT or look up www.cleft.org.nz.
There are heaps of us out there.
PM me if you want our email address or ph to chat.

Edited by BettyBoop



1 Samuel 1:26
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fire_engine Quote  Post ReplyReply Direct Link To This Post Posted: 04 February 2009 at 9:57pm
** bump **
Mum to two wee boys
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KateEmma Quote  Post ReplyReply Direct Link To This Post Posted: 06 April 2009 at 12:43pm
Hi Shelley,

Just flicking you a quick email to see how you're going? Have you had anymore scans?
Things here are good, just waiting for the little guy now :)
Have you been put in touch with the Cleft Support Team, they have been emailing with coffee group dates, i am quite interested in attending, just thought i might need to have the baby first hehe.
Well just letting you know im thinking of you.
Have a great day
Kate and Baby xoxox
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