Cleft Lip and/or Palette

[Smx83]

Hi Purplemamma & Leesha,

Thank you so much for your support and your support....I felt really guilty being so upset because I thought that maybe I was being a bit ungrateful....I am a lot better & the feeding is getting better although she is at her 9 week spurt this week so is a bit whingy but not too bad.

I don't bawl my eyes out as much these days! Thank goodness...it was definately a big shock to the system & I had a lot of fear about what my families would say but now I don't care anymore & I am definately thankful that it is something that can be fixed & she should not be treated any differently!

Leesha, you are so blessed that your bub is okay & can bond with your baby by breastfeeding!

My husband thinks we should start her on solids soon....because sometimes the feeding is still a bit hard...not sure if it's a good idea starting her this early...has anyone started their babies on solids earlier than 6 months with a cleft?

Does this mean that food will come out of her nose?!

Thanks! Sharon xxxx

[leesha]

Hi all,
Taj is doing really well and feeding like there is no tomorrow!! I am lucky he does have his palate because he can suck out of the bottle himself!!! I am still expressing...2 months now!!! Every 6 hours i am on that pump! It's hard work but worth it when he gets weighed because he is doing great!
He had his first immunisation last week and cried but I didn't so I am very proud of myself!!

We have an app at the RCH on friday to do impressions for a dental plate cos is top gum sticks out a bit...but they aren't sure how far they can push it back because he does have his palate...do you have any info on dental plates and if they are painful or hinder feeding etc...????

They are going to operate at 6 months on his lip so until then not much is happening!!

I am still trying to figure out how to get pics on here so you can see him...I am a bit computer dislexic! Heeeeeeeheee!
Hope you are all well and talk soon!!!
Leesha xoxoxoxoxox

[Pretty Butterfly]

Oh babe, I'm so glad he is doing so well!!!!!

With the dental plate, it is used to push a palate back together, or push a gum back. Kane has a cleft lip and gum!!

My surgeon doesn't think they do much good, and we never used one, even though he has a wide cleft. He said they get enough "growth" before surgery anyway, without the hassle of a plate. I was dubious, but Kanes palate and gum space are at least half there size than at birth!!!!

I know a mum on here questioned her doc about them, he wanted them to have it, and then agreed to not do it, so just get all the info you can first. That said, he may need it anyway!!

Let us know how you go babe!!!

[Nettie]

Leesha - for the expressing! Yes, it's hard work and I gave up after 3 months (supply dropped to less than one feed a day by then!) so I can certainly empathise.

Liam started with a plate for feeding but gave up on it after 3 weeks as he learnt to feed without the plate (clever boy!) and we haven't looked back! However, I think the plate Liam had fitted was a different one than you're talking about!

Hope all our clefty bubbas are doing well... isn't it funny they're mostly boys?

[Nettie]

Went to 'Cleft clinic' today and they just asked about his feeding etc and we were told that we could try him on solids from 5 months but to make it quite runny to begin with (especially because of the cleft). We're going back in December to schedule the surgery for March-ish... Liam was fabulous again today - he's a real trooper, even when he's overtired, overstimilated and generally stuffed around with. What a little man!

[Smx83]

Hi guys, Just thought I'd give you guys an update...Taylor is 5 months next week and had her check up at the hospital for her surgery, need to get her hearing tested next month to determine whether she needs grommits...has anyone got a bub who has had grommits?? If so, what ways do you keep their ears dry, ie bathing and swimming as I would like to take her for swimming lessons in the summer but unsure what I can do to keep her ears from getting wet...

Also, just from speaking to some mothers at the last hospital trip, I noticed a mother was using the rubber pigeon teat and the squeeze bottles....I was chatting with her and she was struggling with this feeding technique as did I when Taylor was newborn and told her about the easy feed chu chu teat, she had no idea that it existed and was told it was no longer available (they must've got the old chu chu flat teat mixed up with this one that I was talking about)....so I do know for a fact that it is being used as when I went to the hospital for an emergency appointment (Taylor was struggling/losing weight, my arm was killing me from squeezing and needed help) and they had given me some teats that not many people knew about and these teats are available but from speaking to the staff at the hospital not many people seemed to mind the pigeon teats or had trouble like I did and so not many people knew about this other option...it is not the old chu chu teat but another type which is still called a chu chu which looks like a normal silicon teat but has a larger hole for the baby to drink out of (when you turn the bottle upside down it drips) I used this on Taylor and it is a MIRACLE....she drinks it so fast...takes her less than 10 minutes...I used to have to stop her sometimes because she drank it so fast when I first started using it! The best thing is that you don't need to squeeze the bottle AND you can buy any normal bottle from anywhere as long as it is the tall straight narrow ones and just replace the teats with the chu chu easy feed teat and no one would ever know your baby had feeding troubles!! I can give you more details if you need more...I just wanted to pass this on to any mums who are struggling with the squeezing method or just want to try this other option as I know that I would have loved to have known this when I was struggling in the early stages! xxx

[DaintreeDream]

I posted this in a seperate thread but I thought that you ladies may be able to help me :

My DD has Pierre Robin Syndrome (Cleft Palette only and Small Jaw). She is currently taking approx. 50ml orally which takes about half an hour for her to drink, sucking on her own - no squeezing, then the rest of her feed (175ml all up, inc. oral feed) she has through a NGT (Nasal Gastric Tube).

I would like to know how long it 'normally' takes for cleft babies to drink their bottles, I am trying to figure out what the next step it in feeding in order to get rid of this feeding tube!

Should I be squeezing it into her mouth so that she doesn't have to work so hard? She is using a haberman bottle.

Smx83 - do you have any further information on the following that may be of any assistance for me?

I can give you more details if you need more...I just wanted to pass this on to any mums who are struggling with the squeezing method or just want to try this other option as I know that I would have loved to have known this when I was struggling in the early stages! xxx

Also a plate has been mentioned by you ladies, is this something that could help me? Never heard of it, it is only her palette that is cleft, her lip and gum are not affected.

It it hard enough expressing full time, then added stress of trying to bottle feed and tube feed... will I ever get to rest???

Thankyou for your help,
Deanne.

[Pretty Butterfly]

Nettie, thats great!! Way to go Liam!!

I love how all doctors are different!! We were told to hold off on solids as long as possible as the extra food that goes up into the passages from the palate can cause more/worse ear infections... Kane was exclusively on EBM till 8 months, and then solids took a while, it does come out the nose a lot!!!

Kanes palate op will be oct/nov!!! I cant wait to ditch the bottle and teach him how to use a sippy cup and a straw!!

Clefts are more predominant in boys, and if I remember right, so is PRS.... This new bubba is a GIRL!!! And no cleft!!! Im so excited, bring on the normal b/feeding, and NO PUMPING!!!

Hope all are okay ladies!!!

[Nettie]

Congrats PM! I know you were worried about this one so I bet that's a load off your mind!

Let us know when you have a date for the op - I'll be thinking of you both!

Liam's been making 'chewing' actions so we think he's ready for more substantial food. He also still feeds every 3 hours (has since 1 month old) so we're sure he's not satisfied with just milk...