This is my all time favourite topic and something I  have been working on for the last 7 years so you  may all have to bear with me here:)

I'm an LLL Leader in Italy, and also the mother of a 6 1/2 year old girl born with a cleft lip and palate. I started researching the subject during pregnancy and have just never stopped. 

To be very brief, my view on breastfeeding with CLP is that breastfeeding is already an obstacle course for any mother, so all the more so for the mother of a baby with CLP (or other physical or neurological difference). Most mothers just don't get a chance. The ones who do tend to be mothers who have previous breastfeeding experience, are convinced of the importance of breastfeeding, have probably already been in contact with an association like LLL, have family support (help cleaning, looking after other kids, no detractors), can afford a good breastpump, have a good birth experience, rooming in, etc. and have a breastfeeding friendly surgeon or cleft team for their child's lip and/or palate repair. All of the above is not an easy script to fill - especially in a community that is not supportive of breastfeeding.

Most of the mothers who have contacted me over the years have 'given up' expressing and/or breastfeeding for the same reasons that other mothers give up; perceived insufficient milk supply, low growth, lack of information and support...usually the mother of the baby with a complete cleft lip and palate simply can't find the time to both pump and latch her baby on. I feel that the mother doesn't get the chance to really tackle the problem.

I speak at parenting conferences regularly and it is tricky presenting the information to the mothers. Most of the women I meet have not been able to breastfeed their baby nor express for very long. Some mothers can be very defensive and one mother wrote recently that she had walked out on my session because she thought I had been blaming  her for 'failing' to breastfeed - the opposite of what I was saying ie. that mothers lack support and information and therefore breastfeeding in these cases is very difficult, if not impossible (some mothers are simply told not to).

I do include a word or two about 'throwing in the towel'. Having spent 7 months of my life expressing breastmilk I know that it can be excruciating (I didn't have so much information at the outset and struggled the whole way through). I use a different expression though 'raise the white flag'  which I have borrowed from an old 'Mothering Magazine' article (you should be able to find it in the mothering.com online archive) written by a mother who had breastfed triplets (!), two with a cleft lip and one with a complete cleft lip and palate. Two of her sons were fed directly at the breast and one with expressed breast milk. She writes that when her sons reached six months of age she 'raised the white flag' and turned to alternative feeding methods. I think very few of us would have reached the six month mark, and perhaps a rare mother would have continued further - what that mother taught me was that every mother has her own limits and in a difficult situation it could be useful to remind the mother that she may need to make choices and will probably not be able to reach all of her mothering goals during those months wether that is feeding or other mothering choices (housework standards, nutrition standards, quality time with children - including newborn - standards). I often borrow the title from Diana West's book telling mothers that they may have to 'define their own success'.

LLL Italy has quite a lot of published material on Breastfeeding with CLP - if anyone would llike to know more, perhaps you could contact me privately. My daughters hospital does have a brochure up about breastfeeding that I believe has positive messages for mothers about realistic goals and how to ask for support. I know that there was an English translation done but I can't find it on the website. I'll see if I can get that put up and then post back here - it would be interesting to hear comments and see if there are changes that could be made to it. We could all use it to suggest changes to information handouts that we come across.

Alice Farrow
LLL Leader, Italy

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