expecting 2nd bub with cleft lip and palette

Breastfeeding multiples, twins, tandem feeding. Or when mum or baby has special circumstances due to illness etc. Share it all here.
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GillianGehrke
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expecting 2nd bub with cleft lip and palette

Post by GillianGehrke » Wed Jan 23, 2013 8:36 pm

I am expecting my 2nd bub in 14 weeks. who has a cleft lip and palette on left hand side of lip up to nose.

Obviously don't know how far back it goes. But will have to think about exclusive expressing till at least first op, roughly at 3 months.

Also managing a active full weaned toddler.


PLEASE Any Advice, want to desperately BF.
Gillian Gehrke

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fellare
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Post by fellare » Wed Jan 23, 2013 8:44 pm

I don't know where to start, there is so much to it. Have you read the booklets?

are you an ABA member? if so, you can go to the group meetings and talk to a counsellor there, who can help prepare you for this. It's really worth becoming a member as you already know there will be some issues. Besides, it's fun to go to group meetings.

Have you got specific questions? we can tell you a lot about how expressing works, if you want, but it's probably best to just buy the booklet on this as that's exactly the info I'd tell you anyway.

Have you seen the threat on EE? there is lots of info and help and it's certainly doable.
Boobymonster weaned at 3.5yrs.
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snowie
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Post by snowie » Wed Jan 23, 2013 9:14 pm

Hello! Welcome to the forum :-D
Mothers Direct has a booklet about breastfeeding cleft babies http://www.mothersdirect.com.au/catalog ... -or-palate
They also sell a DVD: http://www.mothersdirect.com.au/catalog ... ding-guide if you are a member of the Australian Breastfeeding Association you may find that your local group library or the branch library may have this DVD to borrow

I would also suggest speaking to a breastfeeding counsellor either on the helpline 1800 686 268 or via email (there is a form on this page: https://www.breastfeeding.asn.au/services/counselling). You can also get in touch with a breastfeeding counsellor at your local group meeting: https://www.breastfeeding.asn.au/contacts/groups

Have you got family/friends/church group who could help to provide support for you for example provide meals or do house duties or entertain the toddler?

The forum is a great place for mum to mum support, you may find someone will pop by to offer further suggestions
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DellaWellaWoman
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Post by DellaWellaWoman » Wed Jan 23, 2013 9:28 pm

Welcome :)

Everything snowie said - get in touch with your local group, and maybe consider getting in touch with a Lactation Consultant before the birth - does the hospital have any on staff you can talk to before bub arrives, so you can put together a plan of attack? If not it might be worth looking into a private LC in your area...

Also, look into what sort of pump you're going to use (I'd be thinking a hospital grade double pump), and whether you're going to buy one or hire one - if you're going to be EE'ing for several months it might be worth investing in one of your own? There's a guide to help choose the right pump at https://www.breastfeeding.asn.au/bf-inf ... p-best-you
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Gwen's Mum
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Post by Gwen's Mum » Wed Jan 23, 2013 11:16 pm

I'll just chime in to second the idea of getting as much support as you can from your local ABA group, as well as the Helpline counsellors. If you're a member you'll get discounted pump hire rates, as well! :) Meeting with an LC ahead of the birth would also be a great way to ensure you've got an action plan all ready to put in place from the first moment; and the LC might also be able to talk you through some options for negotiating hospital protocols, things you can do antenatally to prepare, etc.

Best of luck, and let us know how you get on! :)
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JMc
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Post by JMc » Thu Jan 24, 2013 2:40 pm

Hi, I have no idea about this, but have been thinking about you since I read your post earlier and thought I'd put down some of the things I'd like to find out before bub arrived if it were me. Some of these might be stupid, because I literally know nothing about it, so pardon me if there is anything inappropriate.

I would like to know what will happen to bub immediately post birth. Will he need extra checks? Will he be taken away? Will there be time for immediate skin to skin?

Is there any chance of normal breast feeding being established? Would baby led attachment be appropriate to try? Could it be a problem to try normal attachment? Would nipple shields help in anyway?

What is the most likely way bub will be fed? Tube? Finger feeding? Syringe? Dropper?

I'm sure you have heaps of questions and things that you are trying to find out, but these are things I can think of off the top of my head.

As for keeping a toddler entertained while you express etc, there are lots of threads devoted to that exact topic if you search for them! Most common things people seems to do it keep toddler close with books etc, give them special only to be used at feeding time toys or craft things, organize snacks for that time, involve the bigger child in helping/give special jobs.

Hope something here is helpful!
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DellaWellaWoman
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Post by DellaWellaWoman » Fri Jan 25, 2013 8:59 pm

Another thing I thought of is settling techniques.

Did you breastfeed your first to sleep and/or for comfort?

If so, then maybe try to work out some sleep/settling/comforting strategies that don't involve feeding?

Or if 'comfort' sucking (rather than feeding for nutrition) could be possible (you might not know that until after bub is born?) you may have that as an option as well?
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Tyler's Mum
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Post by Tyler's Mum » Mon Jan 28, 2013 11:37 pm

Hi, I had a cleft baby also.. It is hard to know how bad the cleft will be until the baby is born. They can identify a cleft lip via the scans but not the palate.

My cleft baby had lip and a tiny hole in his palate. He was able to breast feed although was very very slow in the beginning which funnily enough i thought it was normal for a feed to take an hour lol! I used a nipple shield for the first few weeks as well, it seemed to help a lot.

His lip was repaired at 3 months, and then the palate at 10 months. Unfortunately at the 10month operation the surgeon mistakenly told me I could breast feed after the palate repair however once he came out of the GA the surgeon said no. It could damage the repair and the only way to feed is a spoon bottle. So I weaned him then and there a rude ending to our BF relationship. I couldnt envisage me exclusively expressing for 3 weeks as I hated expressing. And was also finding my supply was getting low anyway. But 10 months was better then nothing.

If your child will need a palate repair question your surgeon carefully with regard to feeding afterwards. If you might need to use a spoon bottle practise with it prior to the op not like us we struggled with it at first but he did get the hang of it otherwise he did not get fed!

By about 4-5 months of age i think (hard to remember my son is 3.5 year old extremely active toddler now!) he was feeding very well and quickly so I think as he got older we both got more experienced in bf and also the lip repair made a difference with suction.

Bless our cleft babies they are special! I am in WA and PMH the childrens hospital over here has an amazing unit dedicated entirely to clefts. Amazing support!

The operations and recovery were hard at the time but it goes so quickly and you get through it. Just reach out for support if you need it. Best of luck!

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