TOTs. Tut, tut, tut! by Alison K. Hazelbaker, PhD, IBCLC, FILCA, CST-T, RCST, PPNE
Recently I attended an in-person conference. I normally enjoy the speakers and the camaraderie of the audience that usually attends this conference; seeing colleagues that I do not get to see on a regular basis. This year was no exception as far as the comradery aspect was concerned. The speakers, or I should say, one speaker, was a big disappointment. Unfortunately, she gave multiple presentations.
Not only was her presentation style overwhelming and a bit confusing, packed with too much information in several 60- 90 minute time slots, but the level of disinformation imparted during these presentations appalled me! The principles of evidence-based and evidence-informed practice was lost on this presenter.
As the presenter launched and journeyed rapidly through her presentations, each slide loaded with 20 or more pieces of information, it became more and more difficult to understand her main points. She punctuated all this information with a steadfast commitment to the notion of “TOTS.” Over and over, she gave examples of “tethered oral tissues” and how they would respond to the various techniques she was laboring to present. Now, perhaps she was hired to heavily litter her presentations with “TOTs” examples but enough is enough when there are so many other infant issues that require the types of therapeutic interventions she labored to impart.
“Tethered Oral Tissues,” a term coined by Dr. Kevin Boyd to include maxillary “lip tie” in discussions surrounding tongue-tie, is a misleading term. I suspect he thought this would be an easy way to discuss maxillary “lip tie” and tongue-tie without having to always separate them out. The notion that the two “problems” always come together, despite the lack of evidence,1 was just then taking hold. Disappointingly, the too-liberal use of the term helped spawn the global “oral ties” industry.
I find the “TOTs” term irritating and irresponsible. Its legitimization has in turn legitimized the diagnosis of both maxillary “lip tie” and “buccal tie,” two fabricated anomalies that have nothing to do with breastfeeding and do not fit in with the tongue-tie-as-a-congenital-anomaly issue.(Thomas) If the buccal and lip areas pose a problem in breastfeeding, they do so because they are acquired from insult and injury not because they are congenitally derived.
To make my point let’s take a look at some facts:
1. The four categories of what Kotlow has dubbed maxillary lip tie, pre-existed his assertions. Two major studies classified the maxillary frenum: Sewerin2 created 8 categories and Placek3. Both studies were published in the early 1970s. Both studies’ classifications were noting the normal variation in morphology of the maxillary labial frenum. Why then did Kotlow3 feel the need to dub normal variations as pathology by using the term lip-tie to describe them?
2. Sewerin2 coined the term tectolabial frenum to denote the fleshy type of labial frenum. Nearly 95% of babies possess a tectolabial frenum until their baby teeth erupt. By the time a child is 12, only 5% still possess a tectolabial frenum.5-8 If the labial frenum is causing any issues at this later point in development, it may be appropriate to consider intervention.
3. A study published in 1994 by Flinck, et al.,6 demonstrated the ubiquitous presentation of the tectolabial frenum (Kotlow’s type 3 and type 4 maxillary “lip ties”) in the infant population, >93% of his very large sample size of over 1000 infants to be exact. How can 93% of infants have a lip-tie? That’s not possible! So think about it, all these professionals are categorizing and diagnosing pathology in infants whose labial frena are actually normal! And, these normal babies are then undergoing unnecessary surgery!
4. There is no science that demonstrates that what Kotlow calls a maxillary lip-tie has a negative impact on breastfeeding. No science backs him up and further, he has no data to back himself up. His “study” was actually an opinion piece published in the Journal of Human Lactation.9 What happened that allowed a manuscript that has no data attached to it get published in a peer-reviewed journal?
5. A second study, Santa Maria, et al.,8 attempted to validate the Kotlow classification tool for maxillary lip-tie. They could not validate it, mostly because the tectolabial frenum is normal in infancy. This study found that not only was Kotlow dubbing normal morphology pathology but when they attempted to create their own classification tool, they experienced utter failure. Their conclusion:
“The Kotlow classification of lip-tie fails to be reproducible by relevant experts. The majority of infants had a significant level of attachment of the labial frenulum.”
6. Studies have demonstrated that the labial frena change with growth and development5,7. What is fleshy and prominent in infancy gets thinner and smaller as the teeth erupt. The attachment point (which has become the main but false justification for surgical intervention) changes as the gum grows beyond the original attachment point. The upper gum grows downward, past the frenal attachment point and the lower gum grows upward, past the frenal attachment point.
7. Kotlow asserted that maxillary lip tie causes facial dental caries. He also claims that breastmilk and breastfeeding at night cases dental caries. He has no data. Multiple studies demonstrate the protective benefit of breastmilk against caries infection until a carbohydrate rich diet undermines this protective benefit. He claims to be a champion of breastfeeding. Is he? Shouldn’t we be talking about appropriate hygiene and diet once the teeth erupt rather than surgically removing tissue that has nothing to do with it?
8. You can’t use an invalid assessment tool to make diagnoses. Period. You can’t do a scientific study using an invalid assessment tool. Period. Proponents of the maxillary lip tie theory will point to several studies claiming that there is such a thing as a maxillary lip tie. All of those studies used the Kotlow classification tool and are therefore invalid. What a waste of time and money!
9. And then there were three TOTs! Buccal tie: A tight cheek area does not equal buccal tie. Tight cheeks can simply be caused by an overfiring facial nerve. The buccal branch of the facial nerve innervates the muscles involved in the lip to cheek area. The facial nerve can be easily calmed with a little bit of massage or other form of bodywork. Here’s the kicker: who says the area is tight? What assessment tool exists that differentiates tight from loose? The assessment /diagnosis process is purely subjective. Given that this area is heavily innervated and very vascular, we must be very careful performing surgery of any kind. Furthermore, where’s the evidence?
10. Tight cheeks equal a better buccal seal. Better buccal seal, better breastfeeding. Why do certain professionals make such a big deal out of this? Again, where’s the evidence?
11. Does buccal tie exist? Yes it does. BUT, and this is a big but, it is characterized by strings of extra fascial tissue wrapping around the gumline and only accompanies rare and severe syndromic conditions. It is unmistakable. Your average infant most definitely does not fall into this category. If a professional sees a buccal tie, they should be sending the family for genetic testing, not ushering them into their offices for a laser procedure!!! Here’s what the presenter said when I challenged her use of buccal tie to describe a tight cheek area caused by overfiring of the facial nerve: (I paraphrase) You’re right. This is not a congenital anomaly like tongue-tie. Buccal tie can be resolved with cheek massage like this (she demonstrates), or like this. I then said: “One cannot call it a tie unless it is a congenital problem and we need to stop using that terminology because it is confusing and it leads to performing unneeded surgery.” She continued to call it a tie throughout the remainder of her presentation. See the problem? Bad habits die hard.
12. The aftercare protocols touted as enhancing healing often cause excessive scar tissue formation and, anecdotally, pain, oral aversion and trauma.12,13 If less is more in studies on this subject, then more is not more. You cannot bring the edges of a second intention healing wound together by stretching the tissue. If you want the edges of the wound to come together, put a stitch (or three) in it!
13. The bottom line is this: there is no proof that the maxillary frenum and the buccal area causes the breastfeeding problems that proponents of “TOTs” claim. An entire industry (religion?) has evolved from this false notion and thousands of babies have been misdiagnosed and subjected to unnecessary surgery as a result. Harm occurs. Who is being held accountable?
No one!
Parents are assaulted by all the pronouncements about the role of the upper lip and the cheeks during breastfeeding. They are often hornswoggled into putting their babies, and ultimately themselves, through hell. They get it from other parents and from professionals. They see it on the internet, they hear about it from their friends, even their dentist tells them about it.
The disinformation they are subjected to convinces them that it is necessary for their babies to undergo these surgeries, by a hot laser with no anesthesia no less, for their babies to successfully breastfeed and grow and not die of airway issues.
Parents flock to the tongue-tie practitioners not only to “resolve” breastfeeding problems but to prevent them even when breastfeeding is going well! They don’t know the facts and the Facebook groups and professionals aren’t telling them the facts.
That notion brings me back to the presenter alluded to in the beginning of this post. She stood in front of at least 100 people and fed them falsehoods. And they bought it! How many walked out of the room thinking they had the magic answers? I challenge the organization who hired her: What were you thinking?!!
As for me, I wasted a precious day of my time listening to garbage. I walked out of there disgusted, disgruntled, but even more determined to continue fighting for what’s right.
References
1. Shah S, Allen P, Walker R, Rosen-Carole C, McKenna Benoit MK. Upper Lip Tie: Anatomy, Effect on Breastfeeding, and Correlation With Ankyloglossia. Laryngoscope. 2021 May;131(5):E1701-E1706. doi: 10.1002/lary.29140. Epub 2020 Oct 2. PMID: 33006413.
2. Sewerin, I. (1971). Prevalence of variations and anomalies of upper labial frenum. Acta Odontol Scand, Oct; 29(4): 487-96.
3. Placek, M., Skach, M. & Mrklas, L. (1974). Significance of the labial frenum attachment in periodontal disease in man. Part I. Classification and epidemiology of the labial frenum attachment. J Periodontol. 45:891–4.
4. Kotlow, L.A. (2004). Oral diagnosis of abnormal frenum attachments in neonates and infants: Evaluation and treatment of maxillary frenum using the Erbium YAG Laser. J Pediatr Dent Care. 10:11–4.
5. Nagavini, N.B. & Umashankara, K. V. (2014). Morphology of maxillary labial frenum in primary, mixed, and permanent dentition of Indian children. J Cranio Max Dis, 3:5-10.
6. Flinck, A., Paludan, A., Matsson, L., Holm, A.K. & Axelsson, I. (1994). Oral findings in a group of newborn Swedish children. Int J Paediatr 4(2):67-73
7. Boutsi, E.A. (2014). The maxillary labial frenum. J Cranio Max Dis, 3:1-2.
8. Santa Maria, C., Aby, J., Thy Trong, M., Thakur, Y., Rea, S. & Messner, A. (2017). The superior labial frenulum in newborns: what is normal? Global Pediatric Health, 4:1-6.
9. Kotlow, L.A. (2010). The influence of the maxillary frenum on the development and pattern of dental caries on anterior teeth in breastfeeding infants: Prevention, diagnosis, and treatment. Journal of Human Lactation, 26(3):304-08.
10. Thomas, J., et al. (2024). Identification and management of ankyloglossia and its effect on breastfeeding in infants: Clinical report. Pediatrics, 154:2. E2024067605.
11. Gartner, L.P., & Schein, D. (1991). The superior labial frenum: a histological observation. Quintessence Int. 22(6):443-5.
12. O’Connor, M., et al. (2022). Complications and misdiagnoses associated with infant frenotomy: results of a healthcare professional survey. International Breastfeeding Journal; 17:39.
13. Bhandarkar, K.P., et al. (2022). Post Frenotomy Massage for Ankyloglossia in Infants—Does it Improve Breastfeeding and Reduce Recurrence? Maternal and Child Health Journal; 26:1727-1731.