By Rebekah Fox, Patricia Wise, Rosemary Dodds, Mary Newburn, Jessica Figueras, Sarah McMullen
This paper reviews the evidence surrounding tongue tie division (frenotomy) and reports on the findings of a national survey to map the provision of UK NHS tongue tie services. The study reports data from 86 of 167 NHS acute Trusts/boards across the UK, plus 20 community Trusts, looking at the availability of tongue tie services, referral numbers and criteria, and the nature of the service provided. The findings emphasise the variability of service provision across NHS Trusts, and the limitations within the evidence base relating to assessment tools and intervention.
NCT is a parents’ charity, providing support and information to women and their partners in pregnancy and the first two years after birth. NCT has a long history of influencing maternity services and related areas of policy in order to improve the care and experiences of all women. From a service user perspective, it is clear that there are wide inconsistencies in access to NHS tongue tie division services. There is also clear concern and valid debate about the quality of the evidence base, and the potentially damaging issues of both over- and under-diagnosis. This report represents a service user initiated enquiry, and calls for further research and service development.
Tongue tie or ankyloglossia is a congenital condition where the lingual frenulum (mucous membrane under the tongue) is abnormally tight, short or thick and restricts tongue mobility. It is estimated to occur in between 2.8% and 10.7% of newborns (Edmunds et al 2011), with estimates of prevalence varying greatly, partly due to the lack of uniform diagnostic criteria (Burrows & Lanlehin 2015). Tongue function is considered more significant than appearance as this has an impact on whether the baby is able to feed effectively (Power & Murphy 2015).
Reports suggest that tongue tie can affect breastfeeding in numerous ways, including maternal nipple damage and pain, difficulty in the baby attaching to the breast, uncoordinated sucking and frequent or continuous feeds (Hall & Renfrew 2005, Edmunds et al 2011). A small proportion of babies are also reported to have difficulty maintaining suction when bottle feeding (Hogan et al 2005). In contrast, it is estimated that more than 50% of babies with observed tongue tie do not experience any feeding problems (Emond et al 2014).
The most commonly used clinical assessment tool is the Hazelbaker Assessment Tool for Lingual Frenulum Function (Hazelbaker 1993), although other researchers have not found all elements of the tool useful. Preliminary work on the simpler Bristol Tongue Assessment Tool shows promise, but it is not known whether it is predictive of a need for intervention (Ingram et al 2015).
Guidance by the National Institute for Health and Care Excellence (NICE 2005) indicates that babies assessed as having a tongue tie that impacts on breastfeeding after skilled support with positioning and attachment at the breast, may benefit from frenulum division. The procedure, known as frenotomy, involves dividing the lingual frenulum with sharp, blunt ended scissors. In infants it is usually carried out without anaesthetic and is seen as a simple, safe procedure with few reported side effects provided that it is carried out by a trained, skilled professional (NICE 2005, Emond et al 2014, Power & Murphy 2015).
However research evidence for the effectiveness of frenotomy is limited (O’Shea et al 2014). NICE (2005) guidance is over a decade old and there is a lack of published position statements from large professional bodies on the diagnosis and treatment of ankyloglossia (Burrows & Lanlehin 2015). This ambiguity and uncertainty is reflected in the uneven provision of services and conflicting advice given to mothers (Care Quality Commission 2015).
Concerns have been raised that tongue tie diagnosis and treatment are a current ‘fad’ or popular ‘quick fix’ for breastfeeding problems, and are not being considered carefully or critically enough. Critics claim that the medicalisation of feeding difficulties may be unhelpful, particularly in combination with an absence of skilled breastfeeding support, and over-diagnosis may damage maternal self-efficacy (Douglas 2013). Preoccupation with tongue tie may lead professionals to ignore other potential causes of breastfeeding difficulties and result in unnecessary surgical interventions (Power & Murphy 2015). There is also a risk of repeat frenotomies where no improvement is seen following the procedure. Issues are further complicated by limited knowledge about posterior tongue tie (a less obvious frenulum located under folds of mucosa at the base of the tongue), which are thought to require deeper frenotomy with greater potential side effects (Douglas 2013).
Evidence of efficacy
Recent systematic reviews (Edmunds et al 2011, Finigan & Long 2013, Webb et al 2013, Francis et al 2015) have found limited evidence from a number of small scale short-term studies that frenotomy can be associated with mother-reported improvements in breastfeeding and a reduction in maternal nipple pain (Francis et al 2015), thus supporting breastfeeding continuation (Finigan & Long 2013).
Research studies include five randomised controlled trials (RCTs) (Hogan et al 2005, Dollberg et al (2006), Buryk et al (2011), Berry et al (2012), Emond et al 2014) and 29 observational studies (Francis et al 2015). There are significant limitations to the trials conducted, including small sample size (25–107 mother-infant dyads) and lack of complete blinding, leading to likelihood of placebo effect, especially where mothers or professionals perceive frenotomy as a ‘magic bullet’. Outcome measures are also variable, including mother-reported improvements in feeding (Hogan et al 2005, Berry et al 2012), improvements in LATCH score (Dollberg et al 2006, Emond et al 2014) and reduction in maternal pain scores (Dollberg et al 2006, Buryk et al 2011).
Selection criteria for breastfeeding dyads entering the trials is variable, therefore we cannot assume that they are representative of women being referred to services across the UK. There may be different levels of clinical, social and emotional breastfeeding support provided prior to considering frenotomy, and higher or lower thresholds for recommending frenotomy as a response to nipple pain or other feeding difficulties.
No studies have explored the long-term effects of division versus non-division on breastfeeding outcomes and maternal and infant health. All RCTs offered frenotomy to dyads in the control group too, either immediately after assessment (Hogan et al 2005, Dollberg et al 2006, Berry et al 2012) or in the following days/weeks (Buryk et al 2011, Emond et al 2014). The majority of the control groups chose to accept frenotomy, therefore longer-term comparisons between the control and intervention groups are not available. Whilst research design would be strengthened by not offering frenotomy to the control group, there are ethical and practical barriers to implementing this protocol. Qualitative studies have highlighted the pain, loss of self-confidence and emotional distress that ongoing breastfeeding problems can cause for mothers (Edmunds et al 2013, Webber & Webber 2016), and there are concerns over slow weight gain and potential dehydration in infants.
Fox R, Wise P, Dodds R, et al. MIDIRS Midwifery Digest, vol 26, no 2, June 2016, pp 243-249
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