Huggies Forum

Bub's with cleft lip/palate Rss

Hi all!

I noticed an old post and thought id start a new one!

Im a mum of a 19 month old "clefty" boy born with a complete bilateral cleft lip and palate. He has had 2 surgeries so far for the repairs as well as having grommets put in.

There are still 2 more operations that we know of, to come. One being his nose, making the tip longer. And the bone graft into the gum. And possibly some cosmetic stuff later on the scarring. Not to mention the orthodontics, speech therapy etc.

Plus there may be an underlying condition that has caused this. We are waiting on test results for chromosome disorders.

Would love to hear from any mums (and dads) with "clefties"!! Im in Sydney by the way smile
[Edited on 21/06/2009]
[Edited on 01/07/2009]
[Edited on 03/07/2009]

Hey there!!
I am also the mum of a clefty... My boy is 21 months old and also born with a bilateral cleft lip and partial cleft palate.. Only one Op so far on his lip. Lots more surgery to come on his palate, nose and a bone graft also. He is a bit of a spunk though, that is him in my sig pic!!!
Are you a member of the cleft palate group??? There is a big forum happening in sydney next Saturday with heaps of guest speakers etc..
What hospital do you go to??
We are on the Central Coast
Bec

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Hi! My name is Bec also! Thanks for the reply!

Your lil man is indeed a lil spunk! Whats his name? My boys name is Jett smile He is 20 months this month.

Im a member of Cleftpals, or at least i think i still am! We have moved a far bit since bub was born so not sure what one im in. Will have to check actually! Is the forum a Cleftpals thing is it?? Do u know where in Sydney it is?

We go to Westmead Childrens Hospital. The team there is absolutely fantastic!! What about u?

Hey there...
Sorry for the late reply, we have been so busy lately, my ds has been in and out of hossy with asthma attacks sad
Unfortunatly, my late reply means the cleft forum has allready been on, sorry. It was last Saturday but apparently it was such a great success that they are hoping to have another one which is great as i didnt get to go.
My lil man is Cameron. We also go to Westmead hospital and his surgeon is Dr Hayward. He is due to go back for a full clinic day in September so i guess we will be finding out then what our next steps will be, ENT looking at removing his tonsils due to choking...
Have you got any of his test results back to see if he has any underlying causes yet?
Hope he is ok

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Hey, thats ok.

Yeah it would be great if they had another forum. I would like to go as well!

Jett's surgeon is Dr Thompson. We had our last follow up appt in April, dont have to see them again for 12 months. His next op will be his nose as far as we know.

Good luck with your next clinic.

No we dont have any results back yet. Could still be another 2 months, its up to a 6 month wait sad

So are u planning on having any more kids? We are trying for #2 now! smile

Hi there. Its great that you have no appointments until next April. We go every 3 months for check ups there cos Cameron has some problems with his swallowing so they keep a close eye on that and we also see the respiration specialist there because of his severe asthma.
Yes funnily enough, we will be ttc very soon. Went off the pill last month and would like to wait another month or 2 to get a good lot of pre pregnancy vitamins into me... No idea what caused Camerons cleft but would like to do the absolute most we can to try and ensure it doesnt happen again so would like the pill well and truly out of my system before... Im not saying it would have had anything to do with it, just trying to make sure in case!!!
So at this point we will be TTC maybe August or September. Very excited, we bought Cameron a cabbage patch doll to try and get him used to being gentle cos he is a bit of a rough nut... Typical boy :0)

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Yep, we were there every couple of months, so we ended up moving to Sydney. We lived here years ago, but now we're back for a reason. We also saw the Genetics team there for the tests and just a general chat about the likelihood of the next bub having a cleft. The chances are 5-7%, you mignt be interested to know, whereas the general population is about 3-5%. Interesting.

We were also going to wait to ttc until august or so. I went off the pill 3 weeks ago. But on Friday night we had a few drinks and one thing led to another, and we didnt use protection! I was so worried as I had only just started the vitamins as well. I went to the dr today and told her and she said not to worry as 50% of pregnancies are unplanned so therefore u cant always be taking the vitamins beforehand, but its important to take them asap.

Yep, Jett is a typical boy as well, I know what u mean. But he loves babies and is gentle with them most of the time.

Do you have msn or facebook or both? Add me, bec78r@live.com.au
and my name is Rebecca Rooney on FB smile

Hey.
Yes I do have face book. I tried to add you but there are quite a few people with your name. My name on FB is Rebecca Amor Garemyn. I am the only person on there with that name so feel free to add me if u like

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Hi ladies,

Thought I'd say hi. My little one is also a 'cleftie'. Lachie has had his lip repair and palate repair coming up in December. We also see Dr Hayward at Westmead. He's a really great Dr, he's done such a wonderful job on Lachie's lip. What stage are your kids up to? Have they had their palate repair?

Hi TJK! I have a 22 month old son who has had his lip and palate repaired and also grommets, and one has come out.

Where do u live? Im in Sydney. Are u on Facebook?

Hi! Its nice to find a group that all understand the cleft babies!

My son, Jyden, was born in april 2009. He had an unilateral cleft lip and a cleft palate.
He has just had his 3ops so far. He had a pharyngoplasty and oronasal fistula to help his speech in may this yr. The pharyngoplasty went really well, although the oronasal fistula procedure didnt work at all. We are now looking at a plate for him.....back to townsville we go :-s
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