Cleft Lip and/or Palette

[~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!

[Pretty Butterfly]

I'm SO happy he is doing so well!! 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!

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