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View Full Version : Cleft Awareness Week is November 8 - 14



the_queen
01-11-2007, 22:12
Cleft Lip and/or Palate is one of the most common birth defect in Australia.
In Australia, it is recorded that this affects one in approximately 600 - 700 babies.
During the first 6 - 8 weeks invitro the usual fusion of the upper lip fails to occur, leaving a gap in the lip. Severity of this differs from child to child from nothing more than a slight notch in the top lip, affecting either one side (uni-lateral) or both sides (bi-lateral) of the lip, to gap/s (or cleft, hence the name) that extend into the nasal cavity. http://www.cleft-sa.sohot.com.au/CleftLip.htm
The way I explain it to people, is that the little things on your top lip, under your nostrils, is where your face fused together when you were a 6-week old embryo in your mother's womb. Vallerie's top lip and gum just didn't fuse together. That's all :) Some cleft-affected kids have just one side that doesn't fuse, some have just a cleft palate, some have just a cleft lip, and some have both cleft lip and palate. My Vallerie has a bilateril cleft lip.

We are very lucky in this country that all operations and appointments with specialists are free of charge to cleft-affected children. I have never paid one red cent (except for a $15 gap payment each visit at her Ear Nose and Throat specialist) for any surgeries or dental work. She has had 3 surgeries for her cleft, she's also had grommets put in, and will have to have another surgery soon to graft a piece of her hip bone into her top gum, to allow her top teeth to grow through as straight as possible. After they've grown through, depending on how crooked they are, she will need to have extensive orthadontic work. Thankfully, due to the lobbying of CleftPALS (the support network) Medicare has a Cleft Lip and Palate Scheme, which means all cleft-affected children receive free dental and orthadontic work until they are 22 years old.

But CleftPALS is not a government funded organisation. The Cranio-Facial Unit and CleftPALS need your donations and support, in order to continue their work in helping children and families cope with this often unexpected birth defect.

November 8 - 14 is Cleft Awareness Week, and Go Casual for Clefts is a fund-raising casual day that you can hold at your school or workplace. PM me if you want to help out, I will put you in touch with the organiser who can give you donation tins and stickers to give out to participants.

the_queen
02-11-2007, 08:32
*******bump :D

Can I?
02-11-2007, 12:37
Hi :wave:

Will this next surgery be Vallerie's last or are you possibly looking at more in the future as she grows? Is speech therapy covered by medicare for cleft kids too?

I might make a donation to cleftpals instead of sending Christmas cards this year. Such a great organisation :thumbsup:

:wave: to Vallerie too. What a special little daughter you have.

the_queen
02-11-2007, 16:31
Hi :wave:

The next surgery she'll have will not be her last, unfortunately, she'll have this bone graft and then when she's in her teens she'll be re-assessed - the orthadontist says she'll have an under-bite which means she'll have to have a mid-face advancement: literally they move the top half of her face (the bones) forward by a few millimetres. This will involve lots of recovery, a face brace :( and is not very nice at all. That op will probably be done when she's around 16-18. And then a nose job/scar lasering/lip revision either at the same time, or a few months later.
For a "slight birth defect" there's a lot of surgery involved. And she didn't have a cleft palate - kids with a cleft palate as well need to have extra surgeries.

Speech therapy is a big issue with cleft kids. My Vallerie thankfully hasn't needed to be referred on to a specialist, but the problem is that there just aren't enough speech therapists for all kids who need them, not just cleft kids. Part of what CleftPALS does is to raise awareness and money for this kind of vital therapy. Also the Cranio-Facial Foundation raises money for this kind of thing too - the reason our kids get free surgery is because of the fund-raising efforts of the Cranio-Facial Foundation. And the Foundation doesn't just help Aussie kids - they bring children in to Australia from Indonesia, Papua New Guinea, and all over SE Asia, to have this surgery here in Australia. Some of these kids are 13 or 14 and haven't had their cleft fixed, which means they've never been able to talk properly, or eat properly, and they are social outcasts. The work of the Cranio-Facial Foundation is desperately needed but hugely under-valued.

That's a lovely idea :) and in fact I'm going to do that too, donate money!

Can I?
03-11-2007, 10:07
I'm sure Vallerie will face all her further surgeries with grace and it will all make it so much easier for her in the long run. That doesn't make it any better in the here and now though I guess :crying:. You are doing an amazing job with your beautiful little girl....her gorgeous smile says it all.

We have a little friend who has a cleft palate and his Mum has had to work pretty hard to get decent amounts of speech therapy for him. He had a large surgery this year and his speech is so much improved. :thumbsup: But he still needs a bit more help.

Pippi Longstocking
03-11-2007, 10:22
Vallerie is lucky she has a wonderful mummy like you to see her through. :hugs: She's a gorgeous kid, full of smarts 'n happiness and my little Lukey is in luff with her Valentine :D

the_queen
03-11-2007, 10:26
:D yes Vallerie said last night he is her boyfriend Valentine :laughing:

Pippi Longstocking
03-11-2007, 10:46
Oooh, I hope we will be inlaws one day! :D

Can I?
03-11-2007, 13:41
Wow that's a scary prospect ain't it?? :p

How cute are they though?

tyesmum
15-11-2007, 20:38
Hi!

We have a beautiful 14 month old who was born with a bilateral cleft lip & palate. Tye's lip was repaired in March this year at 6mths old and then his palate was repaired/created in October. Tye had no palate at all that extended to the back of his throat. The surgeons have done such a wonderful job and Tye has bounced back so quickly from both surgeries! We didn't need to keep the arm splints on for long as we were always with him and he seemed happier to be able to move around normally, therefore always busy and not reaching to his mouth.
We still have a couple of ops to go, at school age to fix up the scarring under his nose and repair and straighten his left nostril. Then we have the bone graft for the top gum as well.
It will be a long process, but at the end of the day we have a gorgeous happy boy and we wouldn't change anything!
Sar