Cleft Palate Baby

Hi there,

We are expecting our third bubs on Friday 6th (booked in for caesar - not by choice!) They have picked up on scans that she will have a cleft palate.

Has anyone else on forum had a child with cleft palate? Any thoughts?

We have registered with cleft.org.nz and have read up on the surgeries. We are feeling fairly comfortable with the whole thing, but are still in the dark a bit as we have never been through this before.

Have not had one myself but have nursed a fair few.   I do know that Robyn "my2angels" little man had a cleft lip, am not sure about palate.

Does baby also have a cleft lip?   

It really does depend as to the extent of the cleft as to how feeding goes. I have seen bubs that have needed nastogastric feeding only, I have seen bubs that have fed with haberman teats that are specially made to help babies with clefts feed, and i have also seen a few babies breastfeed wonderfully despite having clefts. So really it is up to you as to how you will be able to feed, or what you want to try. Overall you'll find that the speach-language therapist and lactation consultant would be great to have help from - which you'll probably be referred but if not, definately ask to be.

The other thing you'll possibly find is that they do checks on kidneys and ears, as those things usually form around the same time as the lips and palate so they do tend to like to make sure that there are no probs with those as well.

Good luck, the surgeries are really amazing and basically it's just getting the feeding sorted to begin with until the sugeries happen.

i don't know much but wanted to add that My2angels's son Kobe looks just gorgeous and you would never know he had a cleft lip when born

Hey Davina, was thinking of you this morning, I know you haven't got much time to go, let me know if I can do anything to help.

Lisa

Thanks everyone!!, it's so reassuring to hear of other babies that have had the surgeries and that the cleft isn't noticable any more.     
I'm a bit nervous about the feeding .. we'll see how things go. I've bought an electric pump so hopefully we can still do breastmilk even if we need to use tubes or bottles.
We have been referred to a speech therapist who is coming to visit us on Wednesday, before Friday's caesar. Apparantly the corrective surgeries will be done in Waikato hospital but I have no idea when.

hiya, yep my son had a cleft lip and my friends wee girl had a double cleft lip and palate. They generally do the lip around 4 months and the palate around 8 months I think from memory. We have had such fantastic support from the hospital. They run cleft clinic and you get free dental, plastic surgery, speech therapy everything. Just be prepared to feel like you live at the hospital though cos your there fairly regularly in the first couple of years. Both my friend and I bottle feed with no problems, there are little devices that go in the bottle that help out. The surgery is done when they are young so its harder on you than the child and they do fantastic repair jobs. If you have any questions feel free to PM me. Good luck.

Oh and there are recent photos of Kobe in the photo gallery if you want to see what his looks like now.

Edited by my2angels