In the last number of years Instagram has become the place where a lot of new parents seek information about breastfeeding, infant sleep, reflux, starting solids and everything else to do with caring for a baby in the first year postpartum (and beyond). I have several IBCLC colleagues who are active on Instagram and post solid, evidence-based, reliable and helpful information on breastfeeding and lactation. And I know from chatting to many of my clients that they value this information, particularly in the first few weeks postpartum when they are establishing breastfeeding. However, there is also a great deal of unsound, makey-uppy, opinioned-based nonsense across social media, particularly on the topic of tongue tie and oral function. And that is what I intend to address in this blog.

Tongue tie, or ankyloglossia, is a clinical diagnosis of a congenitally short, tight lingual frenulum which interferes with breastfeeding, but there is no universally accepted definition. A recent systematic review found that its prevalence is 8% (Hill, Lee and Pados, 2021). There is evidence that releasing a tongue tie (ie performing a frenotomy) can result in improved maternal pain and LATCH scores, but no evidence that frenotomy results in better infant feeding (Schlatter, Schupp, Otten et al., 2019; Hill and Pados, 2020). Rates of tongue tie diagnosis and frenotomies have increased massively over the last decade, as evidenced here in Ireland by the number of practitioners currently offering the procedure. Unfortunately though, there are currently no official figures available on the number of procedures being performed. However, a Canadian study found that in Canada there has been a 4 to 40 fold increase in the prevalence of frenotomies over the last decade, and described “runaway rates” of frenotomy in some parts of the country (Lisonek, Liu, Dzakpasu et al., 2017).

There are still gaps in the literature when it comes to tongue tie, and little consensus on how it should be diagnosed (Van Biervliet, Van Winckel, Vande Velde et al., 2020). Working in private practice I see a large number of babies who have had a posterior tongue tie release (often with little or no improvement in feeding) and many of the parents I see have been told by a healthcare professional that their baby has a “small” or a “slight” posterior tie. Yet, according to an article in the British Medical Journal

“…no definitive anatomical study or robust definition of posterior tongue tie exists in the literature, nor does evidence to prove a causal relationship between posterior tongue tie and feeding difficulties in affected babies. For this reason, posterior tongue tie is generally not recognised or treated within the UK’s NHS setting.” (Fraser, Benzie and Montgomery, 2020).

Furthermore, the The Australian Dental Association’s Ankyloglossia and Oral Frena Consensus Statement 2020 statess that the use of the term ‘posterior’ tongue-tie can result in a normal lingual frenum being classified as abnormal. This statement reports that ‘posterior’ tongue-tie should not be used as a medical diagnosis.

As for lip ties,

“There was no correlation between maxillary frenulum grade and comfort with breastfeeding, pain scores, or latch. There was also no relationship between tip to frenulum length (tongue tie) and visualized lip anatomy, suggesting that tongue tie and lip tie may not cluster together in infants.” (Shah, Allen, Walker et al., 2021).

More recent studies on lip ties concluded that

“The majority (98.1%) of infants receiving a lingual frenulum release alone had successful feeding after only one procedure, and only 5.8% of all infants receiving any intervention required a maxillary frenulum release for successful feeding, calling into question the relative necessity of performing maxillary frenulum releases for breastfeeding difficulties.” (Towfighi et al, 2022)

and that there is

“…no correlation between superior labial frenulum (lip tie) attachment grade and breastfeeding outcomes to include length of breastfeeding, maternally reported confidence, maternal pain, or infant weight.” (Haischer-Rollo, et al.,, 2022)

And don’t get me started on buccal ties. There is no evidence that they interfere with breastfeeding or that lasering/cutting them necessary or warranted

The upshot of the gap in the literature on tongue tie has been a proliferation on social media (particularly Instagram) of personal theories, observations and opinions from “tie savvy” professionals, being presented as facts. And this is what parents are being exposed to, often from large accounts with tens of thousands of followers. It makes it difficult for them to discern evidence-based information from nonsense and not surprisingly is contributing to heightened anxiety not only about tongue tie, but about all manner of “oral restrictions”. I had a trawl through some of the big accounts on Instagram accounts posting about ties, and here is some of what I found. Please note, the following statements and claims are from a range of different accounts, and I have chosen not to identify individual accounts.

“The tongue is the epicentre of developement”.

No it’s not. Show me the evidence. And what does this even mean? I’ve seen variations on this general idea posted by several accounts, that the tongue affects every part of the body:

“It is a big muscle that affects everything from the mouth to the toes, and everything in between. When the tongue is weak, the whole body compensates”

or how about this:

“The tongue is quite literally connected to the toes”

Literally connected to the toes? Mmmmm, don’t know about that. Also, this:

“Tongue ties have a domino affect, impacting your body from the top down.”

So a tongue tie can make your toes curl. That’s what they say.

Some of the other claims about tongue ties you will find if you care to take a look on Instagram are the following:

• Stork bites happen more to babies with prenatal oral dysfunction and tethered oral tissues because there is more compression and less movement.
• A double chin is a sign of tongue tie.
• Chubby cheeks are an indicator of tongue tie.
• Clenched fists and crossed feet are a sign of tongue tie.
• Plagiocephaly is a sign of tongue tie.
• Frequent breastfeeding is a symptom of tongue tie.
• Reflux is a symptom of tongue tie.
• Clicking when feeding is a symptom is a sign of tongue tie.
• A white coating on the tongue is a stark indicator of reduced oral function.
• Lip blisters show that the tongue is not doing its job.
• Heavy sweating while sleeping is a sign of tongue tie.

Where’s the evidence for any of the the above? Exactly. You could pretty much post a meme saying just about anything is a sign/symptom of tongue tie. And no one will challenge you about it. It’s irresponsible for professionals with a big social media following to post this kind of information, especially when many of their followers are vulnerable new parents who desperately want to make breastfeeding work.

The other notion that is heavily pushed by many of the “tongue tie professionals” on Instagram is that babies who have a tongue tie don’t just need a release, but that they need treatment from a “multidisciplinary team”. In addition to seeing a lactation consultant and having the release(s) performed, the babies apparently need pre-release therapy and post-release therapy (craiosacral therpy, osteopathy, myofacial therapy). And exercises and suck training to “create new muscle memory for the baby”. And they may also need to training to do tummy time from a “certified professional”. All of this means a fairly significant expenditure by parents, just to be able to breastfeed. You have to wonder, are babies so broken, so defective, that they need a “multidisciplinary team” of 10 people, just to enable them to breastfeed?

Of course, some babies need a tongue tie release. And some babies will benefit from bodywork. But the misinformation and untruths being disseminated at the moment on social media is just madness.

References:

Billington, J., Yardley, I. and Upadhyaya, M. (2018) ‘Long-term efficacy of a tongue tie service in improving breast feeding rates: A prospective study’, J Pediatr Surg, 53(2), pp. 286-288.

Fraser, L., Benzie, S. and Montgomery, J. (2020) ‘Posterior tongue tie and lip tie: a lucrative private industry where the evidence is uncertain’, BMJ, 371, pp. m3928-m3928.

Haischer-Rollo, et al. (2022) ‘Superior Labial Frenulum Attachment Site and Correlation with Breastfeeding Outcomes’, Laryngoscope, 2022 Mar 2. doi: 10.1002/lary.30059.

Hill, R. R., Lee, C. S. and Pados, B. F. (2021) ‘The prevalence of ankyloglossia in children aged <1 year: a systematic review and meta-analysis’, Pediatric research, 90(2), pp. 259-266.

Hill, R. R. and Pados, B. F. (2020) ‘Symptoms of problematic feeding in infants under 1 year of age undergoing frenotomy: A review article’, Acta Paediatrica, 109(12), pp. 2502-2514.

Lisonek, M. et al. (2017) ‘Changes in the incidence and surgical treatment of ankyloglossia in Canada’, Paediatrics & child health, 22(7), pp. 382-386.

Schlatter, S. M. et al. (2019) ‘The role of tongue‐tie in breastfeeding problems—A prospective observational study’, Acta Paediatrica, 108(12), pp. 2214-2221.

Shah, S. et al. (2021) ‘Upper Lip Tie: Anatomy, Effect on Breastfeeding, and Correlation With Ankyloglossia’, The Laryngoscope, 131(5), pp. E1701-E1706.

Towfighi, P. et al., (2022) ‘A Retrospective Cohort Study of the Impact of Upper Lip Tie Release on Breastfeeding in Infants’, Breastfeeding Medicine, doi: 10.1089/bfm.2021.0140

Van Biervliet, S. et al. (2020) ‘Primum non nocere: lingual frenotomy for breastfeeding problems, not as innocent as generally accepted’, European journal of pediatrics, 179(8), pp. 1191-1195.