Cleft Lip and Palate

Feeding a baby born with a cleft lip and/or palate

After giving birth to a baby, one of the first things a mother will want to do is to feed her infant. This process may be less straightforward if the baby has been born with a cleft. These babies may find it difficult to latch on to their mother’s breast, create a vacuum and put their tongue in the right place to allow them to suck properly. However, if the cleft is small or narrow then breastfeeding can work well. 

Babies who are born with a cleft palate may find it much more difficult to breastfeed because they can’t suck properly. Also, milk and other liquids/foods can leak out from the open palate and run through the nose until the child has an operation and the cleft is repaired. In some rare cases, or if the baby has a syndrome such as Pierre-Robin Sequence (PRS) (see ‘Cleft and other conditions’) parents may also need to use a special bottle or a naso-gastric (NG) tube (a tube that goes through the nose into the baby’s tummy). There are positive aspects to bottle or tube feeding: most importantly, feeding in this way allows the parents to know that the infant is getting enough milk and will be able to gain weight and grow properly. 
Bottle-feeding a baby born with a cleft can prevent the soreness and discomfort often associated with breastfeeding. Also, bottle-feeding means that fathers can help feed: this gives increased opportunities to bond with their child and can provide the mothers with well-deserved respite.
The issues around looking after a new baby can mean that new parents and carers may rely heavily on health care professionals’ advice. However, families with a baby born with a cleft have mixed experiences about finding out how to feed their infant. Some new parents are told by the Clinical Nurse Specialist (CNS) about feeding when he or she visits the family, usually within 24 hours of giving birth. Speech and language therapists also understand how the muscles of the mouth and throat work and they too can provide helpful advice.
These health professionals have been trained in cleft services and are seen to be both experienced and knowledgeable, providing lots of helpful information about feeding and other issues. 
Sometimes the person who provides the first advice about feeding is the midwife or maternity nurse. If these health professionals do not receive any specialist cleft training they may be unclear about which infants with a cleft can breastfeed easily and which cannot. This can mean that parents are given inappropriate advice and may become confused. If parents do not receive the correct advice about feeding very soon after the child’s birth, they may be left to struggle through a very distressing time on their own. Further information and support for parents feeding a baby born with a cleft lip and/or palate can be found at the Cleft Lip and Palate Association website.
For infants who are unable to breastfeed an effective alternative is to feed the baby using specialist squeezy bottles. This makes it much it is easier to know how much milk the baby is actually drinking and whether he or she is getting enough. The mother can express her own milk and continue much of the breastfeeding process. However, this can be a time-consuming process and some mothers report that it is exhausting. Mothers who express milk to bottle feed need sterilised equipment, a hand or automated breast pump and a way to store and freeze milk for future use. 
Sometimes, mothers find it difficult to express milk for bottle-feeding and this may lead to feelings of guilt. Some parents described the process of bottle feeding as an ‘endless cycle’.
However, it is possible to top up breastmilk with formula milk in order to give the mother a rest and ensure that the baby continues to be well-fed. 

The main types of squeezy bottles are currently available that make it easier to feed babies born with a cleft lip/and or palate are ‘MAM’, 'Dr Brown' and ‘Haberman’. 

Some people think that the Haberman bottles are particularly user-friendly and cleft-specific. They have long teats allowing parents to squeeze the milk into the mouth at a pace the baby is comfortable with. The Teat should be squeezed in time with the baby’s attempts to suck so that a rhythm can develop. The Haberman allows the infant to get the milk by themselves by compressing the teat (a valve system directs milk out of the teat into the mouth). MAM bottles are squeezed in time with the infant suckling. The majority of cleft teams use the MAM bottles but there are alternative bottles that can be bought although they are not specific for cleft. One of these bottles is made by ‘NUBY’ and there is another called ‘Vital’ and both have a squeezable body and can be purchased on the Internet.

Cleft infants get wind/colic as they swallow more air during suckling as they cannot seal off the nose from the mouth. The design of the Haberman bottle lowers the chance of this happening because the amount of air intake is reduced. 
Babies with clefts are fed elevated rather than lying flat. It can be difficult to find a good and comfortable position to feed the baby as milk and other foods can leak from the open palate and run out through the nose: this can attract unwanted attention from members of the public. For most babies, feeding only takes a few days to establish and nasal regurgitation usually settles after a couple of weeks. 
If babies are unable to feed by breast or bottle they will be taken to a Special Care Baby Unit (SCBU) to have a nasogastric (NG) tube fitted so they can be fed by syringe (see www.clapa.com website for more information). This is most likely to happen if there is an unconfirmed diagnosis of Pierre Robin Sequence (PRS) or other syndromes, pre-term or difficult birth. 
This can be a very distressing time for new parents and can have an effect on the mother’s ability to bond and produce breastmilk. In SCBUs where there is no policy for NG tube feeding at home, babies may stay in hospital for longer than they might need to otherwise.
Some parents are given advice to start weaning their babies born with a cleft palate earlier than the recommended 6 months (see www.clapa.com website for more information). This is partly to ensure that their child would gain and maintain weight but also to assist in the preparation for surgery to the palate.

Last reviewed June 2017.
Last updated June 2017.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email