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Infant feeding

Get advice and support with infant feeding from other users here.

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Original poster

BF baby with cleft palate - Hints and tips please!

20 replies

DrJo · 19/10/2006 13:15

I am due in mid Feb but the 20 wk scan shows my baby has a cleft lip and there is the risk of cleft palate. The cleft nurse has said this will cause problems with breastfeeding and that a plate (used to block the cleft while feeding) won't really help - Does it make it impossible to BF or just difficult to do it without supplementing with a bottle - Does anyone have any experience of this?

OP posts:

intergalacticwerewolf · 19/10/2006 14:46

DrJo, I have no experience of this, but I found some stuff on a bfing website called kellymom for you here

HTH

suedonim · 19/10/2006 20:04

DrJo, do get in touch with the NCT who have breastfeeding counsellors who will be able to help you. You could also put out a message here on MN for Tiktok who's a BFC.

HauntedsandCastle · 19/10/2006 23:59

I was spoon feed due to a cleft lip, but that was 33 years ago and I am sure things have advanced since then.

I would contact Clapa for helpful advise. They should be able to send you some info regarding feeding issues

Original poster

DrJo · 23/10/2006 09:15

Thank you to you all for the advice and links - I've been reading lots of useful stuff on the kellymom site (thanks for that IGWW) -We are in touch with CLAPA, but their website is rather outdated I think - I'm hoping they will put me in touch with some local mums so I can get some first hand advice - I'll try NCT too.

OP posts:

twickersmum · 23/10/2006 09:24

my friend had a baby with cleft palate, she wasn't able to breastfeed but became a demon expresser - expressed for 4 months! she used bottles with a specially designed teat.
At 6 months (approx..?) her dd had an operation to correct it. Has had no problems since, speech fine etc. I know she found clapa absolutely fantastic.

Shivs1974 · 23/10/2006 12:00

It would also be worthwhile asking your hospital whether they have a specialist cleft nurse who will be able to give you guidance. I know that Bristol (which covers the S West) definitely has them - and they should be able to offer advice on bfing.
For unrelated reasons my dd never latched on and I exclusively expressed for her first year - so it is possible.
Good luck!

fairyjay · 23/10/2006 12:14

DrJo
My ds was born with a cleft lip and palate - he was my first, and to be honest, I wasn't encouraged to breastfeed, and didn't push it myself. I wish now that I had tried harder.

But I did express until after his first op., which I think helped us both.

You might get some better (and more up to date) firsthand experience on this board - [email protected].

My ds is now 14, and the most fantastic boy we could wish for.

Which hospital are you under?

Original poster

DrJo · 23/10/2006 16:33

FairyJay - Thanks for the reply and to Shivs and Twickermum - We are in York, so come under a cleft specialist in Leeds - We have seen the cleft nurse and that is what got me looking for advice from mums who have been there (IYKWIM). She was really helpful and nice, but I got the impression that sucessful BF'ding was rare and expressing for a prolonged period was also unusual. I wanted to know where to set my sights and what was options there were based on what other people had managed - I've been told some BF and then top up with expressed or formula milk - I'll check out the message board you suggested - Thanks

OP posts:

bluemoo · 12/11/2006 15:31

Hi, hope you're still checking this posting DrJo.

My little boy was born in July with a bilat cleft lip but a normal palate. We didn;t know about it before he was born, and everybody told me I probably wouldn't be able to breastfeed, but he's managed brilliantly. It took him about 36 hours to get the hang of it, and he did have a couple of top-ups with formula, and I expressed for a couple of days to help my milk come in quicker. My only problem now is that he feeds almost constantly - up to 12 hours a day at one point!

If you want to BF then go for it, there's no reason you shouldn't and if the baby does have a cleft palate you can get an orthodontic plate made that will help. CLAPA does a leaflet about feeding which is great, and you can start expressing a couple of weeks before the babies due to bring your milk in early.

Really good luck with it - my little boys had his lip fixed 2 weeks ago and they've done a fantastic job of it. The cleft surgeons etc are so good now they do an amazing job, and you will get lots of support.

Original poster

DrJo · 13/11/2006 09:19

Bluemoo - thanks for the encouragement and glad to hear your DS is doing well - Well done for persisting with BF'ding - I think that is the technique I will need to adopt I'm not sure that they still recommend using a plate for cleft palate as it doesn't seem to help, so I will probably need to get handy with a pump and accept that it will all take lots of time.

OP posts:

bluemoo · 14/11/2006 21:15

Obviously the cleft nurse will know more than me about the plate thing. I did meet a baby in the clinic last time we went who had a plate to help feeding, but she was quite poorly with other things too and having to be tube fed.

Really good luck with it all - if you are as determined as you sound I'm sure you won't have a problem. The cleft team are fantastic and will give you loads of help if you need it. The slow feeding has been the biggest problem for me, but as long as you have lots of people to sit in cafes with while you feed ( I met some lovely people at post-natal group) you shouldn't have a problem. It was also really lovely once my little boy had had surgery and his feeds went from over an hour to 30 mins - probably would still feel like a long time to other people but seems really short to me!

My other piece of advice is never to feel you need to apologise for the way your baby looks - other people have been fantastic about it, and a lot of people have told me they really miss his old lip as it gave it character and a beautiful big smile. My 92 year old grandma also told me that having a cleft lip meant he'd been kissed by the fairies and was really lucky - thought that was just gorgeous.

Hope everything goes well with the rest of your pregnancy etc. Good luck!

chipmonkey · 14/11/2006 22:08

DrJo, no experience of this but you may want to get a powerful double electric breast pump and have it ready just in case. There are loads of posters here who exclusively pumped for months/over a year, jabberwocky, throckenholt and Shivs spring to mind so it can be done if necessary!

bluemoo · 15/11/2006 12:10

Good plan chipmonkey, but talk to the cleft nurses first DrJo - they will almost certainly lend you one automatically. They lent me a medela double pump - one of the powerful mains operated ones just after my ds was born, and I've got it until I stop breast feeding. So check with them before you fork out for one. It may just be the south Thames area who does this, but I suspect its across the board.

chipmonkey · 15/11/2006 13:58

at the UK! Everyone here has to buy/rent their own pump.

bluemoo · 15/11/2006 18:27

But I'm in the Uk chipmonkey or has my sleep-deprived brain just misunderstood?! (shouldn;t tell you about last nights all night feeding frenzy DrJo might put you off bfing!)

I live in Surrey and I'm pretty sure most of the cleft teams around the country lend out good pumps for free. One of the few advantages to having a baby with a cleft lip!

Original poster

DrJo · 16/11/2006 09:11

Bluemoo - Thnks for the good advice - I have spoken to the Cleft nurse and she says electric pumps are readily available here (I'm in York) - where are you ChipMonkey that things are so different? CLAPA have also already sent me two squeezy bottles and teats. Bloomoo did you use one of those "express yourself bras" at all?

Like the thought of LO being kissed by fairies - might use that to "explain" things to my DS (aged 3.5) when baby arrives

OP posts:

bluemoo · 16/11/2006 18:25

Glad you sorted the pump thing out DrJo. I've never heard of 'express yourself bras', but I guess the clue is in the title and they sound like a great idea. One of my friends sterilised her breast shells and collected milk in those.

My top tip for giving yourself a break if you do end up bfing is to express on one side while you feed on the other. Then you can give them a bottle or two a day and give yourself a bit of a break. Takes a bit of practice but well worth it! Also means they're then used to bottles in case they have problems after the op (having said that my ds refused the bottle and bf in recovery as soon as he came round from the anaesthetic!).

Make sure you get one of the CLAPA leaflets on feeding your baby with a cleft lip and/or palate if you haven;t already - really, really useful and has lots of tips on things like extended latching and breast compression, both of which I used and no-one else told me about them.

evamum · 17/11/2006 20:04

I have no experience personally but my BIL had a severe cleft palate and was exclusively BF for 5 months with no problems or need for aids. My MIL was told me as there was a small chance my DD would have one too.
HTH, just wanted to let you know it can be done (and this was 23 years ago...)

chipmonkey · 17/11/2006 21:40

no blue, I'm envious of the UK! I'm in Ireland!

3andnomore · 17/11/2006 22:27

It's so great to see this thread..I have a bilateral cleft lip and palate, and was never bf'ed, due to the fact that my mum was just plainly told it's impossible, so she never tried....!
Best of luck and I hope it all works out!

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