Cleft Lip and/or Palette

[meow]

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

[Pony]

srv, what a gorgeous little man Stephen is.

[Pretty Butterfly]

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

[srv]

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......

[srv]

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

[srv]

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.

[Ginger]

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

[Pretty Butterfly]

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.

[srv]

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.

[Pretty Butterfly]

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!!!

[~Kaz~]

Hi Jodie,

That is such great news! Well done Kane 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!

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

[Pretty Butterfly]

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!

[~Kaz~]

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,

[Nettie]

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!

[Pretty Butterfly]

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

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!! 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!!

[Nettie]

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!

[Pretty Butterfly]

I carried my pump with me!! It is a double electric, and is my worst/best friend!! 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!!

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

[Nettie]

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!

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!