Breastfeeding a Cleft-affected Baby

A cleft lip or palate happens when the structures that form the baby’s upper lip or palate (roof of the mouth) don’t join together when a baby is developing in the womb. Cleft affects around 1 in 700 babies. Many babies who have a cleft lip are able to breastfeed, with adaptations. Babies who have a cleft palate can’t generate the suction pressure needed to remove milk from the breast until the palate is repaired by surgery.

When you find out your baby is cleft-affected (they have a cleft lip, cleft palate, or both), you may be unsure about breastfeeding. Breastfeeding is possible, although it is likely to require perseverance and lots of support.

Read stories from mothers who have successfully nursed their cleft-affected baby.

If you know your baby will be cleft-affected, it can be useful to do some research and planning in advance. You will find some ideas below which might help, as well as tips which have worked for other families, and links to other useful resources. All babies are different, and you will find your own way that works for you and your baby.

LLL Leaders are available to support you with your feeding journey, whether you have just found out your baby is cleft-affected, or you would like support with how feeding is going. Find your local Leader here.

Jump to sections in this article

Ideas and tips which may help you and your cleft-affected baby breastfeed
Maintaining your milk production
Feeding in the early days
Using a nursing supplementer (also known as a supplemental nursing system, or lactation aid)
Delivering milk to your baby through a supplementer
Finding your groove
Feeding positions
Feeding your baby at the breast after surgery
Stories from mothers who have fed their cleft-affected baby
Further Reading
Links to other resources

Ideas and tips which may help you and your cleft-affected baby breastfeed

Maintaining your milk production

Whether or not your baby feeds directly from the breast, establishing and maintaining your milk production is the first priority. This keeps the door open to breastfeeding (or breastfeeding more) when your baby is able to, and gives you plenty of your own milk to feed them in the meantime. The protection of human milk is even more valuable for babies who need surgery. If your baby is not able to feed directly from the breast, or is not able to breastfeed efficiently, you can still signal your body to make plenty of milk by expressing milk from your breasts.

Milk production top tips

When? Ideally, start feeding or expressing within the first few hours after birth.

Why? In the early days and weeks after birth, your breasts are trying to work out how much milk your baby needs. The more milk you remove, the more milk you will make.

How often? To bring in a full milk supply, in the first month or so after birth most mothers need to breastfeed or express at least 8-12 times in 24 hours. When breasts feel full, milk production slows down. So to maintain high milk production, keep the milk moving. How often you remove milk is much more important than when, or how long for.

How? A double electric ‘hospital grade’ breast pump is usually the most efficient tool, if you need to express all or most of your milk. Your cleft specialist nurse may be able to organise for you to borrow one free of charge, or they can be rented. Some mothers find they can express enough milk with a smaller pump, such as a wearable (hands free) pump, or by hand expressing. You can find more information on expressing and storing your milk here.

Bringing in a full milk supply for a baby who can’t breastfed yet, or can’t breastfeed very well, is really hard work. Get as much practical support as you can, so you can focus on your baby and your milk. The first few weeks are the hardest. Later on, many mothers find that they can express less often, but still get the same amount of milk.

Feeding in the early days

In the first day or two after birth, babies take a small amount of milk at each feed. If your baby needs more milk than they can take at the breast, there are lots of ways you can feed your baby extra milk, whether that’s your own expressed milk, donor milk, or formula. These include:

using a teaspoon,
using a syringe,
using a cup, and
Finger feeding – attaching a tube to your (clean) fingertip and letting your baby suck on your finger while delivering milk through the tube from a syringe

Special bottles designed for cleft-affected babies.

Milk production increases every day in the first week or so. A syringe or teaspoon quickly becomes too small for the amount of milk your baby needs. A nursing supplementer might be easier (see below). It is also possible to buy bottles and teats specially designed for cleft-affected babies; your cleft specialist nurse can advise on which type might work best for your baby.

Using a nursing supplementer (also known as a supplemental nursing system, or lactation aid)

Breastfeeding with a nursing supplementer.

Nursing supplementers allow a baby to latch onto the breast and feed while getting extra milk through a tube positioned next to the nipple. They’re not as common as bottles, but can be a great option when a baby isn’t able to take all the milk they need directly from the breast. At-the-breast supplementation has many benefits, including stimulating your milk supply and skin-to-skin contact. Babies can cope with having milk in different ways: if you want or need to use a bottle as well as a supplementer, that’s doable and may make an intense pumping and feeding schedule feel more manageable.

A friend said she had wondered why I was going to all this effort to bridge the gap until potentially breastfeeding after Russ’s palate surgery, but on seeing us feed she said she got it: I was already breastfeeding. Another friend saw us feeding from across a restaurant table and said, “Oh, so the worries about Russ not being able to breastfeed didn’t come to fruition!” Comments like these make me feel so happy I could cry.

Read Sarah’s story here.

There are three main types of nursing supplementer systems:

Disposable bag systems
Bottle systems
Homemade systems

If you can, it may be helpful to work with a breastfeeding supporter who has experience of using nursing supplementers.

Delivering milk to your baby through a supplementer

Babies with a cleft palate often can’t produce the suction required to get enough milk purely from breastfeeding. When using a supplementer, they may need the supplemental milk to be delivered to them, rather than relying on suction alone. If you use a bag or bottle system, you may be able to gently squeeze the bag or bottle to deliver the milk. If you make a small hole in the top of the bottle or bag, the milk will flow through the tube without requiring suction.

An alternative is to use a syringe. To do this:

Attach the syringe (instead of the bag or bottle) to the supplementer tube.
Gently squeeze the plunger to deliver the milk at the right rate for your baby.
Try pushing the plunger against your leg or chair if you struggle to hold and squeeze the syringe at the same time.
You may need to experiment with finding the right size syringes and tubes which fit snugly so the milk doesn’t leak. A midwife or breastfeeding specialist may be able to help.
When the syringe of milk is empty, you can either transfer the tube to another full syringe (which you have prepared before the feed), or refill the same syringe with more milk. If you have a clip or flow controller on your tube, you can use this to prevent spillage at the end of the feed and when switching or refilling syringes.

Tips for using a nursing supplementer

If your baby gets fussy when starting or during a feed, you can try directly expressing some milk into their mouth to calm them. Skin-to-skin contact can be very helpful to keep you both calm, too.
If the tube is positioned below the nipple (rather than on top as is often suggested for babies who are not cleft-affected), or near your baby’s chin, milk is less likely to spray into the back of your baby’s nose, which is usually a sensitive area.
Delivering milk to your baby through a tube takes practice. Ideally, the milk will flow when they are sucking and stop when they are pausing or taking a rest. Watch for when your baby swallows. You will see their jaw moving in front of their ear, and might hear a tiny “keh” sound with each swallow. You may hear more sounds when feeding a cleft-affected baby than other babies. You will know if you are delivering milk at the right rate for your baby if they are swallowing often (every 2 – 3 sucks), and seem happy and engaged at the breast. It’s normal for babies to suck less often and to become sleepy and relaxed towards the end of a feed, after a period of active sucking.

Read about how Sarah and Russ got on using a nursing supplementer with a syringe here.

Finding your groove

There’s no doubt about it – at first it’s tricky to use a supplementer! It takes perseverance to find a way that works for you and your baby. But there are people who have done it. The reward is being able to feed your baby at your breast, and knowing they are getting your milk.

Some mothers who have fed their baby this way say that it took a few weeks to get the hang of juggling everything: setting up the supplementer and taping it, delivering the milk at the right speed for their baby, and holding their baby in a comfortable position with a good latch. Once they figured it out, the process became simple. With the right support, you can get there too.

Read more about nursing supplementers here, including cleaning the system.

Feeding positions

Finding a comfortable position for you and your baby takes time, and different positions work for different people at different times. There is no one way to hold a cleft-affected baby – the right way is whatever works for you and your baby.

Holding your baby in an upright position may help them lose less milk from the cleft.
Some mothers can ‘plug’ the cleft with their breast tissue, but this doesn’t work for everyone.
You may find that using the ‘cradle’ position works well, and you can make minor adjustments to move your body or your baby’s body more upright.
If your baby gets upset in a particular position, adjust or move to another position and calm them before trying again. You might find your baby needs a different position for each breast.
When your baby gets tired, they may start to leak more milk out of their mouth.

You can find lots of ideas about different ways to position your baby here.

Feeding your baby at the breast after surgery

Some babies are not able to feed directly from the breast initially, but they can after cleft surgery. If you plan to feed directly at the breast after surgery, it’s helpful to make sure that your baby feeds at the breast, at least partially, until the surgery. This will help them ‘remember’ how to latch, as well as understanding that this is where milk comes from.

It may be helpful to know that, after surgery, babies sometimes struggle to feed at the breast for several weeks, while they build up strength and get used to their new mouth anatomy. During this time, keep your milk supply strong by expressing often. Your milk will help your baby heal and recover from the surgery.

Summary

There may be more options for feeding your cleft-affected baby than you think!
Your milk is especially valuable for a baby who needs surgery.
Breastfeed or express early and often after birth to bring in a strong milk supply.
If you would like to breastfeed your baby after repair surgery, it’s helpful if you can breastfeed before surgery.
Even if your baby can’t breastfeed effectively, they can still enjoy the contact and comfort of nursing at the breast.
A nursing supplementer enables you to feed your baby extra milk at the breast. It’s tricky at first, but once you get the hang of it, you can do some or even all of your feeding at the breast.

Stories from mothers who have fed their cleft-affected baby

Anna and Oskar

Becky and Isla

Sarah and Russ

Credit for illustrations: Brigitte Sparnaaji, from Breastfeeding Illustrated, published by La Leche League GB, 2021.