Issue 90 is out now

Welcome to The Green Parent Forum

A place where you can chat to like-minded parents, form new friendships, share ideas, events and recipes. Use the search tool to find a wealth of information from the past 10 years of forum discussions. Register today and become part of our supportive community.

Does anybody have any experience of feeding a little one with a cleft lip or palate? Looking fir a bit of reassurance and hope. We were recently told our little one will at the very least be born with a cleft lip. We are hoping it’s just that. But, it puts a huge dampener on my hopes to breastfeed again. I found it so rewarding in so many ways before and really want that closeness and to give the best I can again.

SAHM to DS 8 years. DS 7 years and DS 3 and a half years and DD 3 months
Breastfeeding ( exclusively pumping ) , babywearing and very interested in all things green and good.

I don’t I am afraid. I have a friend who has a little boy with cleft lip and I know she mentioned a cleft lip forum that she found very helpful.

Are you in touch with Ruth Greener?  She used to post here, and is certainly on FB.  her middle child had cleft lip (and palate?) Might be worth posting in FB GP board.

My last three children have all had a cleft lip and palate (a bilateral one).  I was determined to “beat” the statistics but really for mine there was no hope at all; as it was a double cleft it was far to wide to get a latch, let alone enough suction. 

It really depends on the severity of the cleft, and/or if the palate is also affected.  I do know of women whose babies had a very narrow cleft (really just a split in the lip, no gap) who have breastfed.  Obviously expressing is recommended, and some babies after the initial lip repair can be breastfed. 

On a side note though it really isn’t a big deal; I found the internet forums not very helpful at the time, but better once I had actually had the baby IYKWIM.  On a practical level I would really recommend the Mead Johnston Soft bottle, they are the cheapest and in my opinion (between three babies we have experimented a lot!) the easiest and most efficient.  Many hospitals now (including my own) recommend the Haberman (around £25 per bottle) but I found these horrible to look at, very slow and fiddly to deal with.

Feel free to pm me for any more info x

Muslim mum of four, home educating, environmental hypocrite (but doing my best) hodge podging through this life…..

I don’t have any personal experience, but I knew a lady who exclusively expressed for 6 months, then continued to feed her baby expressed milk until well into toddlerhood. There is also a great blog post here: http://www.mamaandbabylove.com/2011/01/25/what-to-do-if-your-baby-wont-nurse/ about “bottlenursing” - bottle feeding in the most nurturing way possible, and her post about encouraging comfort nursing (“make your boobs a happy place”) might also be useful.

Angie

http://www.etsy.com/shop/WashedUpFamily Sea Glass Jewellery from the beautiful South Coast[/color]

http://washedupfamily.blogspot.co.uk/

http://www.etsy.com/shop/NannieCool , http://nanniecool.yolasite.com Nannie Cool - for beautiful slings, playsilks, toys, nappy wraps and accessories made by Grace’s Nannie. All designs are “Approved by Grace”

http://bournemouthattachmentparents.blogspot.com/

I have no personal experience but a good friend had a baby last year with cleft lip and palate and managed to breast feed through I mix of perseverance and mixing breast milk in a bottle and breast feeding . it was hard and time consuming but she believes worth the effort

when life gives you a rainy day play in the puddles !!!
mum to 4 sons 13,7,4 and 2
a daughter 8 years ,
and always in my heart my angel xx

Have you made contact with your local breastfeeding counsellors?  Just wondering if it’s worth doing before baby is born and letting them know that you would like their support.  They’d have time to do some extra reading.  You might even be able to meet with them before which would make post birth meetings easier.  Our NCT ones are really friendly locally adn you don’t have to be a member or pay anything.

I don’t know if you have heard of Dr Jack Newman.  He has a breastfeeding clinic in Canada & really is the world’s medical expert on breastfeeding.  If you cannot get to his clinic in Canada, Jack or his colleague Edith will answer your breastfeeding questions by e-mail.  I honestly would not have managed to successfully breastfeed my daughter if it wasn’t for them.  Maybe it would be worth contacting them for advice.
  http://www.nbci.ca/index.php?option=com_content&view=article&id=62&Itemid=33

mom to 2 girls age 8 & 3

Thankyou everyone, I shall make good use if your suggestions , links and offers of private conversation.
Thankyou grin

SAHM to DS 8 years. DS 7 years and DS 3 and a half years and DD 3 months
Breastfeeding ( exclusively pumping ) , babywearing and very interested in all things green and good.

I think you live near to me, have you thought about contacting La Leche League? The Suffolk leader is a dear friend of mine and will be able to find out information for you if you would find that helpful. Please let me know if you would like me to give you the contact details (we also have LLL meetings on the 2nd and 4th Thursday at Ravenswood Childrens centre in Ipswich….next one tomorrow!) PM me if you’d like to meet up or anything.
Sending you big hugs, I was thinking about you after one of your previous posts and wondering how you were doing xxxxx

Ali, ever disorganised but lucky mama to 4 beautiful children

Hold tenderly that which you cherish

I also know the BFN ladies if you would prefer that xxx

Ali, ever disorganised but lucky mama to 4 beautiful children

Hold tenderly that which you cherish

Ali - 10 April 2013 08:47 PM

I think you live near to me, have you thought about contacting La Leche League? The Suffolk leader is a dear friend of mine and will be able to find out information for you if you would find that helpful. Please let me know if you would like me to give you the contact details (we also have LLL meetings on the 2nd and 4th Thursday at Ravenswood Childrens centre in Ipswich….next one tomorrow!) PM me if you’d like to meet up or anything.
Sending you big hugs, I was thinking about you after one of your previous posts and wondering how you were doing xxxxx

 

Thankyou so much Ali, that would be great!
We had another scan and found that our baby’s cleft is lip, gum and most likely palate too, so although I won’t be able to breastfeed, I will express.
I have plans for what to do after the birth ( which we all know rarely go without a hitch)
I’ve done lots of research too, but I think I just need a but of reassurance that I can manage it all really. I’m in the Woodbridge area Ali, are you close by?

SAHM to DS 8 years. DS 7 years and DS 3 and a half years and DD 3 months
Breastfeeding ( exclusively pumping ) , babywearing and very interested in all things green and good.

I know people that have exclusively fed expressed milk (would that be the right term?)
I am near you, I live in Felixstowe,  I’m now going to message you lovely xxx

Ali, ever disorganised but lucky mama to 4 beautiful children

Hold tenderly that which you cherish

One thing that you may wish to consider is researching formula.  Babies with a cleft lip and palate often lose more than 10% of their newborn weight and take longer to regain it.  As there is a general 10lb/10 week rule for surgery (although this may vary from centre to centre) formula top up is usually encouraged alonside EBM if the weight gain is very slow.  Hopefully that won’t be the case for you though.

Muslim mum of four, home educating, environmental hypocrite (but doing my best) hodge podging through this life…..

ummsalam - 26 April 2013 07:45 AM

One thing that you may wish to consider is researching formula.  Babies with a cleft lip and palate often lose more than 10% of their newborn weight and take longer to regain it.  As there is a general 10lb/10 week rule for surgery (although this may vary from centre to centre) formula top up is usually encouraged alonside EBM if the weight gain is very slow.  Hopefully that won’t be the case for you though.

 


I plan to express like mad and hope for the best.  I’ve only found one formula that I would give in a circumstance of real need by holle.
I dons mind expressing every hour to begin if I have to as in my experience newborns pretty much do that anyway.
We have a lovely cleft nurse and I shall get a small range of bottles and teats to try out.
I already know I shall be doing everything in my power to feed our little one as efficiently as possible. Just keeping our fingers crossed that the palate cleft won’t be huge.
I know there’s nothing we an do now other than hope and be prepared.
grin

SAHM to DS 8 years. DS 7 years and DS 3 and a half years and DD 3 months
Breastfeeding ( exclusively pumping ) , babywearing and very interested in all things green and good.

Hi there,
Bit late getting to this and you have had lots of great suggestions and support already.  I’m guessing you are already in touch with CLAPA, and know about the free squeezy bottles and range of teats they provide.  As Aisling said, my middle child was born with a fairly severe bilateral cleft lip and palate.  I exclusively expressed until he was about 8 months, then combined EBM with formula until I stopped expressing just after his 1st birthday.  Noah had other complications when he was born (I won’t scare you with details) - if he’d ‘just’ had a cleft I wouldn’t've given formula at all, I don’t think….  But, who knows…
Anyway, do pm me if you want to know more - especially about expressing logistics and emotions around not being able to bf.
One other thing that I will say in ‘public’ is that exclusively expressing is harder work than breastfeeding AND bottle feeding put together.  You need the time it takes to get the milk out, the time it takes to then bottlefeed it to bub (add on all the washing up and sterilising etc, plus an extra bit of time for a bub that will probably feed a bit more slowly due to the cleft).  Then add washing and sterilising the breast pump.  I’m not trying to put you off at all - it can be very rewarding - but do start to think about ways you’ll be able to manage time, favours you can call in, and definitely empty the first five months after bub’s arrival to take the pressure off - I mean no weddings, no trips away etc.  You might find it’s fine and you are really up for visits and travel - but it’s better for that to be your positive decision than a commitment you wish you hadn’t made.
Do PM me if you think I can help.

Share this with friends

Recent Posts