Breastfeeding your baby who has been born with a cleft lip and/or palate

If you know your child will be born with a cleft lip and/or palate, there is so much to take on board initially and so many questions.
Breastfeeding with cleft lip or palate

Congratulations! I am Amy, mum of 3 girls, and my youngest Zoe was born with a cleft lip and palate. Having loved breastfeeding my eldest 2, I desperately wanted to be able to give Zoe the same. It was hard to come to terms that this breastfeeding journey would look very different and it has not been easy, but we are delighted and proud to have been able to exclusively feed her breastmilk with all the amazing health benefits that it brings. Here is a bit of information about some of the things we wish we’d known, like places to get support and the top tips we’ve learnt which I hope you’ll find helpful.

 

Antenatally

If you know your child will be born with a cleft lip and/or palate, there is so much to take on board initially and so many questions. The ideals and perceptions of what you thought feeding your baby may be like are challenged and it can be hard to come to terms with that. Not knowing the extent of the cleft and how that can affect feeding adds further uncertainties.

However, there are things you can do to prepare and positive steps you can take which will benefit your baby and get your breastfeeding journey off to the best start, and although it may not turn out how you had envisaged, before the diagnosis of a cleft, you can still give your baby all the benefits of breastmilk.

Expressing colostrum antenatally: this is the initial milk which your body will produce during pregnancy and in the first few days after birth but can also be expressed from 36 weeks. There are some good YouTube videos demonstrating how to do this. This can be stored and frozen in sterile syringes, which you can get from the hospital antenatal clinic or the local breastfeeding specialist midwife, who the cleft team can put you in contact with. Every drop counts, so don’t be disheartened if nothing happens or you get tiny amounts Practicing your hand expressing now is a great skill to have.

Make a feeding plan: talk to your cleft team, midwife and partner about your feeding plans, what would you like to happen, anything you definitely don’t want to happen, and have the plan written down in your notes so everyone involved in your care can see it. Keep copies of this in case it gets lost, or a new member of your team wants a copy.

Research “exclusively expressing”: you may not need to go down this route if the palate is not affected or if you decide exclusively expressing is not something you want to try – however, knowledge is power. Getting information now will help you make those decisions and get your breastmilk supply well established in your baby’s early days, to get off to the best start.

When baby is born

Enjoy those first cuddles and skin to skin time, offer breast to baby and be guided by them. Skin to skin helps boost milk supply and is brilliant for baby and you to bond. These simple steps apply to ALL babies where possible.

Baby born with a cleft lip and palate unaffected

Hopefully breastfeeding directly is possible in the same way as any baby born without a cleft lip. Try different positions to get a good seal, seek advice from midwives, breastfeeding support groups and the cleft team if needed. UK Cleft Lip and Palate Breastfeeding Support Group on Facebook  is also a good source of support.

Baby born with a cleft affecting the palate

Breastfeeding a baby with a cleft palate, or cleft lip and palate, may work when the cleft is very small or narrow, or submucosal, and getting good support is important. Forming a vacuum to suck may not be possible when the palate is affected, but skin to skin and offering the breast for comfort are excellent ways to help boost milk supply, and bond with your baby. Surgical repair of cleft palates usually occurs between 6-12 months, after which you can attempt to establish or increase direct breastfeeding. However, if breastfeeding isn’t possible, you can still give baby all the benefits of breastmilk through expressing milk. 

Expressing top tips

Hands free expressing bra

A hospital grade double electric breast pump: The cleft team will lend you an excellent one. Other more portable options are available to buy, there is more information regarding this in the ‘expressing out and about’ section. 

Supply and demand: Breast feeding is all about supply and demand; the more you pump/ baby feeds the more milk will be made. If you are wanting to exclusively feed your baby expressed milk then the pumping schedule needs to mimic how a newborn baby would breastfeed (which is nearly all the time!). For the first 12 weeks you need to be expressing both breasts every 2-3 hours for a minimum of 20 minutes, day and night i.e. 8-12 x a day. This sounds a lot and it is! The following tips are all things to make this a little easier.

This site has loads of really great evidence-based information on exclusively expressing, https://kellymom.com/mother2mother/exclusive-pumping/

Get a hands-free expressing bra: These mean you don’t need to hold the pump in place, so can have a cup of tea, feed baby, browse your phone, play with your baby etc whilst they are on your lap. These are available online or you can customise one with a cheap stretchy sports bra with holes cut into it. You can also use hair elastics on the bra to help support the weight of the flanges and bottles. See Pinterest or Google for more info.

Milk Storage Table

Use coconut oil or lanolin to lubricate flanges (funnel shaped parts of pump which come into contact with breast) / nipples and areola (darker area around nipple). Breastmilk may be sufficient after a while.

There are 2 excellent, supportive, and well informed Facebook groups which I have found very valuable and are worth joining-

 Make sure flanges are the correct size: If the funnel shaped parts of pump which come into contact with breast (flange) are the wrong size it will affect supply and cause you to become sore. Measure using this guide. Alternative sized parts are available to order online.

pump chart

Milk supply stabilises at about 12 weeks, so it is important to continue with 3 hourly expressing until then. After 12 weeks the frequency of expressing can be reduced gradually without it affecting your milk supply as much, which then becomes more manageable.

How to increase supply

  • Add in more expressing sessions, even if milk isn’t coming out, as the stimulation will signal to make more milk
  • Try breast massage and compressions whilst pumping
  • Try expressing after a hot shower
  • Relax, and distract yourself- stress has a negative effect on milk supply
  • Try covering up bottles with socks so you can’t see how much has come out yet!
  • Add in a power pump (see table)

Expressing out and about

You are protected by the same rights and laws as direct breastfeeding, so legally you are able to express anywhere you choose, at any time, in public.

Should you wish to be more discrete you can use a breastfeeding cover, or get nursing vests to wear under normal tops so your tummy is not exposed whilst expressing. There are nursing rooms in some large shopping centres. A quiet corner in baby friendly cafe with a friend or relative to hold baby are a good safe place to have a first go at public expressing.

If you are wanting to express for a long time and like to get out an about a lot then I would recommend getting a more portable breast pump than the large one supplied by the hospital. Having a pump which runs off batteries, is light weight, quiet and powerful is a huge help.  

Which one? Well, there are several on the market, however the Spectra s1 is a favourite of exclusively expressing mums. Before buying a different pump I would advocate researching previous posts on the Exclusively Pumping UK Mums Facebook page, or doing your own internet research.  Most pumps are designed for occasional use or for people with an established supply who are returning to work and need to pump occasionally in the day, so most pumps are not suitable for exclusively expressing. Remember you will need a hospital grade pump and it will get a lot of use if exclusively expressing.

I found pumping whilst a passenger in the car is a great time saver at weekends or trips out. If you have a pump with batteries, or get a car mains adapter for your pump, this can become routine.

Public expressing is not for everyone – but having two older girls, my journey has involved expressing in a whole host of places: zoos, parks, cafes, theme parks, beaches, theatres, etc… I want to reassure you that I have never received any negative comments or “looks”. My experience is that people are too busy and focused on their own lives, or phones, or surroundings, to be interested or notice if you are expressing. Give it a go out and about and I hope you are as pleasantly surprised as I have been by how oblivious the public are and how it can be fitted around everyday life. Below are some photos of us expressing in the centre of Bristol for a charity campaign to raise awareness of public breastfeeding in all its forms.

Every drop counts, be proud of any amount your baby gets!

I love this table as it shows the benefits of breastfeeding really clearly and weather you breastfeed for 1 day, 1 month or 1 year there are clear reasons to feel really proud of what you have achieved for you and your baby.

I wish you all the best on your breastfeeding journey however it looks or turns out, if you would like any further information about breastfeeding or expressing or just a chat about having a baby affected by a cleft I am more than happy to be contacted via the South West Cleft service office 0117 342 1177 the cleft nurses there have my up to date contact details. Or your local cleft service may have other contacts locally who would be happy to speak about their experiences.

NCT – Reasons to be proud
These are just some of the ways that breastfeeding makes a difference to both mothers and babies.

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