After having overcome some breastfeeding challenges with my first daughter, I was looking forward to an easier experience the second time around. Finding out that my second daughter, Miriam, would be born with a unilateral cleft lip and palate was a cold shower – the first of many. I didn’t know exactly how it would affect breastfeeding, but I knew deep down that my dreams of a carefree breastfeeding experience were no longer going to come true. When I got home, I took my breastfeeding reference book off the shelf and discovered that breastfeeding (as I then imagined it – exclusive breastfeeding at the breast), with a cleft lip and palate, may not have even been possible. I was thoroughly devastated.
I managed to muddle through my daughter’s first seven months, patching together information from different sources, feeding her expressed breast milk and partially breastfeeding at the breast as she got older, until her palate operation (at 6 ½ months) after which she learnt to breastfeed unaided. In the seven years since, I have spoken with a multitude of parents whose babies have clefts, who have recounted their difficulties with breastfeeding. From their experiences and my own research, I have come to the conclusion that many difficulties faced by the parent and baby are management issues — lack of support, lack of information, and lack of practical help. Instead of receiving the best breastfeeding support available (i.e. the red carpet treatment), these mother-baby dyads and their families are often forgotten, or their difficulties are underestimated.
In the US, a cleft lip and/or palate affect approximately 1 in 600 live births 1. Frequency of the conditions varies from country to country. Despite the incidence of clefts, there is very little in the breastfeeding literature about breastfeeding with a cleft lip and palate, and very few breastfeeding counselors and lactation consultants seem to have direct and repeated experience with it. Even my family doctor knew very little about the condition; we had to do quite a bit of research before finding my daughter’s future cleft repair team. Now, with the number of Internet parent support groups 1, 2, finding information is a little more straightforward. There is still a long way to go in many countries, however, before a positive diagnosis of cleft lip and/or palate is followed by relevant and reliable information on what to do next.
Cleft lip and/or palate are umbrella terms for various presentations of a facial cleft 3. A cleft lip can affect the lip only, lip and gum (alveolar ridge), and may possibly include a submucosal cleft palate. A solitary cleft palate can be submucosal (not seen by the eye and frequently missed during postnatal checks), or involve the soft palate, or both hard and soft palates. A cleft lip and palate will include lip, gum (alveolar ridge), and hard and soft palates. The size of the cleft can vary from a few millimeters to a centimeter or more.
Different clefts will impact breastfeeding in different ways 4, 5. The recently revised Academy of Breastfeeding Medicine guidelines for breastfeeding with a cleft lip and/or palates, note that the “literature describing breastfeeding outcomes is limited, and the evidence is anecdotal and contradictory.” The guidelines state that both suction and compression (pressing breast between tongue and jaw) are necessary for milk transfer during breastfeeding and that the amount of oral pressure generated during feeding will depend on the size and type of cleft and the maturity of the baby. For this reason, babies with a cleft lip only are more likely to breastfeed than those with a cleft palate or a cleft lip and palate. Some babies with small clefts of the soft palate generate suction, but others with larger clefts of the soft and/or hard palate may not. Older babies generate more suction than newborns and premature babies.
Anecdotally, many mothers recount that they have been successful at breastfeeding exclusively when their baby presents with a cleft lip only (even when bilateral, and even including the alveolar ridge or gum). There is some discussion over whether a baby with a cleft of the soft palate can manage to breastfeed exclusively. I have come across four different personal accounts of mothers who have successfully breastfed (at the breast) a baby with a cleft of the soft palate 6, 7, 8, 9. Breastfeeding an infant with both a cleft lip and palate appears to be more elusive, although one medical study in Thailand9 recounts success with exclusive breastfeeding. Hopefully, more studies will be forthcoming.
From my experience, I believe that with optimal breastfeeding support immediately after birth and in the following days, babies with clefts will be able to show their true breastfeeding potential. I call this “the red carpet treatment.” Expert support in the very early days after birth should help parents to avoid most of the more common breastfeeding difficulties, especially problems associated with low milk production. What we parents often don’t receive is help getting our babies to latch on in the first hours after birth, evaluation of breastfeeding and milk transfer, and determining whether supplementing is necessary and how that should be done. This “red carpet treatment” would help ensure that we maximize our milk production, whether the baby is receiving milk at the breast or via other means. When milk production is insufficient, we also need to know what our options are when exclusive breastfeeding is not possible.
The “red carpet treatment” of breastfeeding support for a cleft-affected infant might include:
- Early skin-to-skin contact and help with latching within the first hour after birth 10
- Early evaluation of breastfeeding, positioning, and milk transfer
- When milk transfer at the breast is insufficient, or baby is unable to latch, help with colostrum expression, within first hour after birth and at least every three hours after that 11
- Assistance with and instruction of optimal expression techniques (hand expression, or combination of hand expression/double electric pumping, in first 48 hours or until copious milk production begins, double electric pumping combined with ‘hands-on’ techniques subsequently) 12
- When milk production is insufficient, help with implementing strategies for maximizing milk transfer 13 and supply, such as hot compresses before a feed/pumping session; breast massages before or during feed/pumping session; breast compressions; breast massage and reverse pressure softening 14 to encourage milk let down; expressing after breastfeeds to build supply; and the use of galactogogues 13
- Evaluation of whether and how to supplement – via bottle, syringe, spoon, or an at-the-breast supplementer; and full information about options including donor milk and formula
- Psychological support
- Practical support – a feeding/pumping plan and how to find the time to manage that along with family/home responsibilities and time for looking after one’s self
Some parents are concerned about knowing the exact presentation of their child’s cleft prior to birth. Knowledge of the cleft can facilitate preparation for breastfeeding and researching and choosing a cleft surgeon or team, but is not necessary. Currently, in the United Kingdom, it is encouraged to express colostrum prenatally 15. when expecting a baby affected by cleft lip or palate, in case a supplement is required after birth. This colostrum is a great backup, although it is important that using this backup not take the place of early breastfeeding initiation and/or frequent postnatal expression, vital for establishing good milk production.
Mothers, who have been successful with at-the-breast feeding, recount techniques that they have found useful, including:
- Closing lip with fingers to help make a seal
- Experimenting with different positions to enable baby to maintain suck and swallow, such as using the breast tissue to close the cleft
- Dealing with early signs of engorgement due to inefficient or incomplete drainage of all areas of the breast such as rotating the position of the baby’s mouth/latch around the breast, reverse pressure softening, hand expression and pumping
- Maintaining an abundant milk supply
- Assisting milk letdown via hand expression, breast compressions, and visualization of the milk flowing
Timing of cleft surgery and surgical protocols vary enormously from country to country and from surgeon to surgeon. There are various programs in force attempting to standardize cleft protocols 16, 17. The cleft may be repaired in one surgery or multiple stages – the palate and lip together or separately. The lip may be repaired as early as two months or as late as a year and a half. The palate may be repaired in the early weeks, at around six months, or after the first birthday. Some surgical teams will allow breastfeeding/bottle feeding immediately after surgery, while others will require temporary weaning from breast/bottle for some weeks. Breastfeeding is usually possible because the breast is soft and pliable, conforming to the baby’s mouth.
Exclusively breastfed babies will often find comfort in breastfeeding immediately after surgery, although some babies may refuse the breast for hours or days. Babies who have undergone palate surgery are often reluctant to feed at all in the early days after repair, and this can be challenging. A baby may be more willing to feed with a cup or spoon because lip suction is not needed. It is important to maintain milk production during this transitional period.
Transitioning to the Breast
After palate repair, there is a chance that the baby will transition to the breast almost fully (palate repair generally occurs from five/six months onwards and solids may also be introduced). This can be a delicate time as many factors occur simultaneously. The baby may be reluctant to feed at all either at the breast, via bottle, or spoon-fed solids as the palate surgery involves the incisioning and redirection of the palatal muscles. A decrease in milk production may occur due to fatigue and stress post-surgery. Transitioning to the breast 20requires extra time and effort.
Transitioning to the breast after palate surgery is the last great challenge in breastfeeding a cleft-affected child – ‘the last hump’ in the difficult breastfeeding journey. When my own daughter was recovering from palate surgery (age six months), she went on an all out ‘nursing strike’ and would scream every time I attempted to latch her onto the breast. I decided to put in one last major effort, dedicating myself entirely to pumping AND nursing. It was a very intense time. In the end, thanks to a silicone nipple shield taped over a supplementing device, Miriam accepted the breast again. Within a couple of days, she was breastfeeding solo without bottles and pumped milk. It was a huge relief, and each time we sat down to nurse after that was a celebration. Many other mothers recount similar experiences.
However, not every baby does go on to breastfeed unaided at the breast. One mother recounts that her son breastfed unaided for around a month before a fistule opened in his palate; he lost suction and ceased breastfeeding. Others have found the process of transitioning to the breast too stressful for both mother and baby. Some babies are more intent on learning to breastfeed, while others are not. Transitioning to the breast should not be our only goal.
One mother of triplets (all three with a cleft!) recounts that she ‘raised the white flag’ when her sons reached six months. It is important to keep that white flag handy. Sometimes it is breastfeeding and/or pumping that will be let go, or it could be something else in our everyday routine and family organization. Evaluating priorities is an ongoing process, and it can be useful to discuss this with a Breastfeeding USA Counselor or a Lactation Consultant (IBCLC).
We all need to feel that we are doing the best for our children. When breastfeeding is harder than we expect, it helps to be reminded that we are doing our best, even if our best is less than we would like. Breastfeeding does not have to be limited to exclusive breastfeeding. The World Health Organization defines breastfeeding 18 as an infant being fed human milk, whether from the breast or expressed (including donor milk), and other foods – we shouldn’t lose sight of that. Every drop of breast milk that we provide is a cause for celebration.
Over the years that have followed my own breastfeeding experience, I have sought out other breastfeeding families, both to offer support, but also to learn more about what exactly makes breastfeeding a baby with a cleft lip and/or palate difficult. The more I hear, the more I realize that we don’t have enough expert support. Parents often arrive at birth very well informed, but lack hands-on help and an expert eye. Sometimes parents encounter criticism and discouragement. I encourage other parents to tell their stories – whether they have attempted breastfeeding and if so, whether they have breastfed partially or fully. Doing so helps to increase the body of knowledge on breastfeeding with a cleft lip and/or palate. I continue to seek out resources, both print and video, and have created a website 19 so that parents and health-care workers have a starting point for their own research.
It takes more than the efforts of one parent to breastfeed a cleft-affected child. It takes not only the patience and support of the whole family, but also the community, especially the health-care community that surrounds us. What we need is more than just encouragement and information; we also need the right support – “the red carpet treatment.”
- PR4. Cleft Lip and Palate Breastfeeding Discussion Group
- PR5. Baby centre cleft moms
- PR6. Exclusive expressing/pumping