Huggies Forum

All mummies and daddies with beautiful cleft palate babies - c'mon in! Rss

HIya

Thought I would start a thread for us parents with clefties! My DS was born with among other things a cleft palate - we have been through repair now, and had some speech pathology, still battling the ear infections and grommetts - dental stuff yet to come!

Come on in, share your experiences or ask questions, let us all support one another in here!

Victoria x
Hi, My name is Kirsty im 24yrs old and i have a 10month old DD who was born with a cleft soft palate. Her palate will not be fixed until 18 months. She is still currently being fed with a squeeze bottle sitting up right so the milk doesn't come out her nose. She is handling solids relativily well, she sneezes her food out sometimes but most of the time manages to get in going down her throat and not up. I wish she could just have it fixed now and get it over and done with!
DD starts Day Care next week as im going back to work so im going to have to watch closely to make sure they are feeding her correctly, i have explained how to feed her etc but you never know what goes on when your not there.
Has anyone else had to wait this long for a cleft palate to be corrected? From what i have read most bubs are getting it corrected before 12 months. I guess it might be because its only the soft palate. I can't wait to feed her from a normal bottle, the squeeze bottles drive me crazy especially in the middle of the night when you don' feel like you have the energy to squeeze the bottle.
Anyway i better wrap this up as its getting very long. Looking forward to reading other peoples stories.
Kirsty
Hiya Kirsty

Can I ask a question - is the reason for the late palate repair because your baby has Pierre Robin Sequence? Our DS has PRS and that is why we had such a late palate repair too - ours was at 18 months. The biggest issue we had with solids was food going into the nose from the moth - we had a rather traumatic trip to the hossy when some spaghetti got stuck. I also used a bottle which you squezzed - but you squeezed the teat rather than the bottle - it was a Haberman Feeder - blinking expensive those teats were too!

I would have been worried about getting other people to feed DS with it - even my mum who is a nurse squeezed at the wrong moment and squirted him in the face LOL! BUt I think if you photocopy the instructions and put them in the daycare bag, they can look it up whenever they need too, and they are usually pretty diligent about that sort of thing, as it is their job to be.

By the time our palate repair came around I was more than ready for it - 18 months is a long time to wait, and the frustration with trying to communicate before he op is hard to deal with too, but I found DS's speech came on leaps and bounds afterwards. We were so proud when the day after his op he started blowing raspberries on my belly - because he could finally get enough air pressure to do it! And straws were very popular too!

Good luck Kirsty - nice to 'meet you'.

Victoria x
Hi Victoria,
DD doesn't have PRS. Im not sure why they are waiting so long to have it repaired. Its frustrating with the feeding issues knowing that it could be fixed and she could get on with it iykwim.
I understand the bottle issues too, everyone thinks they can feed her and they know 'how to' but they don't and if i tell them 'you need to squeeze it harder, she isn't getting any milk' they say 'i am squeezing it hard, she is crying because of her teeth' but i am her mother and i know shes crying cause she id frustrated because the milk isn't coming out fast enough and if you squeeze it too hard the milk squirts out all over DD's face, lol, like what you said.
Its great to hear that the little ones come along in leaps and bounds after the surgery. And sucking on a straw, wow, it must be great as a mum watching them meet new 'milestones' so to speak.
Nice 'meeting' you also Victoria. Its good to have somebody to talk to about this, in the 10 months DD has been with us i have never once spoken about her cleft with anyone, i found that no one understood because they have not been in this situation. Alot of people just say 'Oh, how did that happen?' as if its a big deal and there is something seriously wrong with her. They have no idea.
Thanks again for the chat.
Kirsty xxoo
Hiya Kirsty

Yeah- we found it hard to find people who knew what it felt like to have a child with a cleft. I used to worry a lot about the feeding and other people doing it when it came to solids - as part of PRS the child has a much smaller throat which meant DS had choking problems with solids sometimes and I was petrified when his nanna fed him once and turned to me and said - 'Ahh how sweet - he's laughing' and I looked and he was choking!! I resolved to not let her babysit him till those issues had been 'grown out of'. I think she needs to wear her glasses a bit more often than she does!!

We were really lucky with our surgeon and cleft team - they were all really lovely. I thought that when DS had the repair, he would come out all battered and bruised looking, but apart from the little stitch they put through the tongue to stop it falling back into their throat - that only stayed in for one day - and the IV etc, he looked great. We were discharged on the 3rd day and looking at him, you couldn't tell at all - just the stitches in his mouth. THe scar looks really tidy too - I tought it would look a bit like a cornish pasty - all puckered and gathered together, but it has healed really quite flat. There is a lady down the road whose DS is a little older and had a cleft lip, and he tells people that his (tiny barely visible) scar is from a sword fight with a pirate - bless!

Better go - I need coffee number two and to get dressed!

Victoria xx
Can I please ask, how did you feed them as tiny babies? The only reason I am asking is because of the sucking reflex babies have, did it make it harder to settle bub because they couldn't get the comfort from sucking?

Amy

Hi Amy - we had a special type of bottle called a Haberman Feeder, which has a really long teat that you squeeze so the milk can go into the mouth without sucking. DS pumped his tongue up and down but had no suction. He 'sucked' his thumb that way too - pumping his little tongue up and down. He did have a lot of trouble settling though - but I kind of think he was really hungry all the time as feeding would wear him out, he would have a short sleep and then wake up screaming for more milk. He didn't have a longer sleep than an hour till he was on solids, apart from night time.


Thanks for taking an interest Amy!

Victoria x
Which is the best bottle to get for cleft palate bubs? My little girl is having bad sucking issues i was getting a chu chu bottle is a haberman bottle better or pigeon?
thanks
Jess grin
(Love the thread by the way grin)

Jess - http://www.playtimemagic.co.nz

Hi Mum2twoGirls,
You can purchase the bottles for cleft palate babies from Childrens Hospitals or through Cleft Pals online (You can't buy them from chemists/supermarkets etc). They are fairly expensive, $30.00 for 1 bottle, maybe more if purchased online and they are the Pigeon brand teats. The bottle i use for my DD is called a squeeze bottle and as the above post mentioned you squeeze the milk into the babies mouth and they just need to swollow it, no sucking required. Its has a filter in the teat which regulates the flow of milk and this is also supposed to help with reducing colic.
If your bub is having trouble sucking you should see your dr first as it could be caused by something that can be easily rectified.
Let us know how you go with your lil bub, hope everything turns out to be fine!
Kirsty
HIya Mum2twogirls

We were reccomended the Haberman Feeder by our hospital - the children's hossy here uses them for all it's babies so I guess it must be a good one - it is quite expensive though. As Kirsty said you can get them through cleftpals, but they are a bit pricey - fine at first but we found after DS got to 6 months of age he would get through a teat a fortnight and the teats are about $17 each (from memory!). I trained DS to use a cup shortly after he was 6 months as that was a lot cheaper, and we were fully on cups by about a year and I very happily threw the Haberman away! I have never used any other system as the Haberman worked for us. We did have other issues as well as just cleft though.
________________

Hello again Kirsty! Glad to see you are still around!

Take care everyone

Victoria xx

Edited cos I can't spell today!
[Edited on 09/02/2008]
Hi Victoria. im 22 & have a beautiful cleft baby. Ayla is 5 months old and was born with an incomplete unilateral left cleft lip. she has always been fed by a normal bottle & teat, so i've had no problems with feeds. She has just had her lip repaired on Monday the 11th. everything went extreamely well {better than i thought, she didnt even cry to my surprise} the surgeon did an excellent job. She has just had her stitches taken out on friday. all loooks great except for still abit swollen & red. i never realised how common cleft babies are, {even though Ayla is the 4th on my mums side to have a cleft} there was two other babies next to us in hospital that just had their clefts repaired.
Hi Alicia,

Cleftpals Vic sent me something saying it was the 2nd most common birth abnormailty, so yeah... it is surprisingly common! I am glad you surgery went so well - I too was surprised how good they look afterwards in terms of bruising and swelling and stuff.

Welcome to the thread - it is nice to have new people to chat to!

Victoria x
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