What kind of support do we need?

What kind of support do we need?

tired meIf you were to ask me what is the biggest hurdle for breastfeeding with a cleft lip and palate, I would say – lack of support – no question.

Lack of information certainly plays its part – some  healthcare professionals will say that breastfeeding with a cleft isn’t possible and it’s not worth trying. Some will say that formula is as good as breast milk. This is incorrect information and doesn’t help anybody.

Advocacy without support can be enormously frustrating, if not hurtful; by that I suggest that is not useful to say that breastfeeding with a cleft lip and/or palate is possible, and that breast is best, without offering practical assistance and support. (edit; I also now reccomend that parents are helped to evaluate whether breast is best for their family when circumstances are difficult)

The exhausted mother in that picture is me. Miriam, my second daughter, was born with UCLP (unilateral cleft lip and palate).

Why was I exhausted? Partly because of breastfeeding/pumping – and partly for a whole host of other reasons. Some of these might be universal to other cleft parents, other parents recount different worries, different experiences – please comment below if your experience was different ;

  • General tiredness from having a newborn,
  • Months of stress and uncertainty resulting from a 16 week diagnosis that was communicated very, very badly,
  • Accumulated stress from having an older child with food allergies/asthma,
  • Accumulated stress from living in a foreign country (it’s easy to underestimate this)
  • Lack of specialised breastfeeding support (either because I didn’t look for it, or couldn’t find it)
    • At the time, without internet access, it wasn’t easy to find an LC with experience in CLP
    • Lack of information (there is still not much information on CLP breastfeeding – hence my Cleft Lip and Palate Breastfeeding website)

The stressors that each of us accumulate are different, but the fact that we arrive at birth carrying anxiety and a burden of stress will certainly impact our ability to breastfeed, negatively impact our milk supply, and affect our ability to make decisions and cope generally.

The Eurocleft project reccomends that cleft parents receive “emotional support and advice about the child’s future management by a specialist in cleft care”. (1) This does not generally happen, nor is a lactation consultant considered as part of the cleft team. What this means is that cleft parents are left to educate themselves in order to choose the best medical care for their cleft affected child, and piece together breastfeeding information from the few, incomplete, resources that are available.

During my breastfeeding experience, what I did receive was encouragement. Encouragement such as – you’re doing a great job, I take my hat off to you, etc – which was nice, but not really support. Being  given breastfeeding information is informative, and essential, but not support either.

What does a new cleft parent  really need? What I would have appreciated in hindsight – or appreciated more of (as I did receive some good and highly appreciated support) is;

  • Someone who recognised that I was exhausted. I needed someone to sit down with me and look at what I was doing and where and how my feeding plan could be improved,
  • Someone who had helped me look at my options – did I want to supplement, what with and how,
  • Someone who had recognised that I was expressing milk inefficiently. I could have done with some strategies for improving supply, reducing pumping time, streamlining the storage, labelling, washing, process (there is info. out there, but when you are already exhausted it’s hard to get out of a vicious cycle, it’s even hard to absorb and process information)
  • Someone who had recognised that I needed psychological support (and that’s tricky, because we need psychological support that doesn’t blame breastfeeding as being THE problem),
  • Someone who could hand an information leaflet to friends and family with ideas on how to support a family who is time poor (doing housework – not offering, just doing – looking after older child, taking her out for the day – cooking meals),
  • A subsidised breast pump (money worries do not help),
  • Breast pump facilities in hospital – both in the outpatient clinic and in ward,
  • A cap for the Medela Special Needs Feeder (seriously, how do you get out and about with your baby if your bottle doesn’t come with a lid – seems silly, but solving little problems like that take time),
  • A cleft team and paediatrician/family doctor that supports breastfeeding (I had both, but some  parents recount being criticised for “insisting” on breastfeeding)

And this is just basic support. Ideally every parent would be referred to a lactation consultant at the time of dianosis of the cleft lip and/or palate, we would have an experienced lactation consultant in every maternity ward to help the cleft baby latch on right from the start, help get milk supply off to an optimal start (via hand expression and/or a correctly used breast pump) and practical help with at-the-breast supplementing. We should have access to comprehensive breastfeeding information, describing practical techniques for positioning, attachment, how to assist milk flow, how to maintain supply, how and when to supplement and with what to supplement. We also require access to intensive, hands on support, for as long as necessary after hospital dimission (or from birth in the case of home birth).

But breastfeeding support, is much more than having a lactation consultant to turn to. Breastfeeding support must come from the whole community – government policies, hospital policies, cleft teams educated about breastfeeding, readily available (and affordable) lactation consultants with knowledge of and experience with CLP), educated peer counsellors, informed family and friends. It doesn’t just take a village to raise a child, it takes a village to BREASTFEED a child with a cleft lip and palate. Stay tuned for more ideas on how WE can do that.

alice-firstname

References;

1. Shaw, W., Semb, B., Nelson, P., Brattsrom, V., Molsted, K., Prahl-Anderson, B., Gundlach, K., The Eurocleft Project 1996-2000: overview, Journal of Cranio-Maxillofacial Surgery (2001) 29, 000 000 http://www.eurocran.org/documents/Gundlach%20Article.pdf

(edited 11.02.2014)