One cleft is not like another

One cleft is not like another

Miriam II
Perhaps this is stating the obvious, or perhaps not. One facial cleft is not like another, and the way a cleft will impact breastfeeding depends on its position and entity.

Some parents/and or doctors become quite concerned about discovering exactly what kind of cleft the unborn baby has via ultrasound diagnosis. As far as breastfeeding is concerned, this is really not necessary, and from what I know, even from a surgical point of view the cleft is best evaluated at birth.

Types of cleft

Cleft lip and/or palate is an umbrella term used for convenience to group a whole series of different situations. The CLAPA (cleft lip and palate association) UK, website, has simple diagrams of various types of cleft and the Medscape article (Cleft Lip and Palate and Mouth and Pharynx Deformities) shows a more in depth description of the anatomy of a cleft lip and palate .

A cleft lip may range from a tiny notch in the lip, may be unilateral or bilateral, and may or may not involve the gum line (alveolo). A cleft of the palate may involve the soft palate or the soft and hard palate, or may involve a separation of the palatal muscles (submucousal cleft) – this latter cleft, being less apparent, is often undiagnosed until feeding problems present. An examination of the palate while shining a torch into the infants nose, has been suggested as a simple and effective diagnostic method. A complete cleft lip and palate can vary in width from some millimetres to over a centimetre, may involve the nose, and may be unilateral or bilateral.

How a cleft affects breastfeeding – realistic expectations

Knowing what other parents have achieved is helpful in formulating realistic feeding expectations for a cleft affected baby, however,  every baby is different, and every baby/parent/family combination is different. It is now generally accepted that breastfeeding with a cleft lip is entirely possible, whether unilateral or bilateral, even when the gum line is involved. But this affirmation has only been voiced strongly in recent years and is due to the large number of mothers who have recounted their breastfeeding success stories. There is a growing number of mothers who have managed to breastfeed successfully a baby with a cleft of the soft palate. One case, documented on video and distributed on Youtube, has attracted more than 10 000 visits. Why some babies have managed to breastfeed at the breast, exclusively, or almost exclusively, deserves to be studied more in-depth. One study on breastfeeding babies with a complete cleft lip and palate, claims exclusive breastfeeding when mothers were taught positioning and expressing techniques. This is another field of study that deserves to be explored.

Further reading, my article  ‘What to expect’

Surgical impact on breastfeeding

The type of cleft will also affect the number of surgeries the baby will undergo in the first year of life which will also depend on where the baby is born and the timing of cleft surgery in that area/country. The timing of cleft palate surgery and pre and post surgical protocols (such as orthodontic devices, and post surgery feeding) can vary enormously from surgeon to surgeon, and this will impact breastfeeding differently.

Further reading, my article  ‘Facing surgery’

Associated problems

The CLAPA (cleft lip and palate association) UK, website, has a useful introduction to syndromes and sequences  which may be connected with a cleft lip and/or palate, namely; Pierre Robin Sequence (PRS) , Stickler Syndrome , Van der Woude Syndrome , and 22q11 Deletion (also known  as Di George Syndrome).

Documented cases

The information we have on breastfeeding a baby with a cleft lip and/or palate, is incomplete. We need to document cases and share the outcomes. I invite parents to contribute your story to this website. Some parents have offered their stories privately, wanting them to be documented but not wishing them to be published – these are also most welcome.

I also invite IBCLCs, breastfeeding counsellors and health care professionals involved with breastfeeding parents, to share their experiences, either through this website or privately, in order to create a much needed dialogue on how to provide the best breastfeeding support to cleft affected babies and their families/carers.

Don’t hesitate to contact me privately,