​Tethered Oral Tissues: challenging for babies, parents, and healthcare providers.

Introduction

Tethered Oral Tissues (TOTs) is a term describing one or more restrictions in the range of motion within the lips, cheeks, or tongue of an individual. This restricted range of motion may be due to an overly short or taught frenum—a membranous fold of tissue which supports or restricts the mobility of one body part to another less mobile body part, or it may be due to fascia tension elsewhere within the body. The end result of tethered tissue regardless of the root cause is that the muscles of the lips, cheeks, and/or tongue are unable to move with sufficient range of motion to support normal and healthy development of the orofacial complex, impacting the ability of an infant to suck, swallow, and breathe functionally. Dysfunction in the orofacial complex may lead to a host of other ailments as the infant physiologically matures, resulting in diagnoses later in life that might have been prevented with swift treatment in infancy.

Exactly what the difference between normal and tethered oral frena and what movement ability constitutes a normal range of motion, or what impact this has on activities of daily living has yet to be widely accepted. As such, optimal treatment protocol has yet to be accepted and standardized.

Incidence and Prevalence

Tethered Oral Tissues

No data exists to explore the incidence of tethered oral tissues (TOTs) as a whole. Some data exists for tethered frena in the tongue; however, this data looks only at the attachment point of the frenum and not at other factors (like fascia restrictions) which may inhibit range of motion of the orofacial complex.

Tied Lips and Cheeks

Labial (lip) and buccal (cheek) tethers are contentiously debated in the literature. The human mouth contains 7 frena: one in each quadrant of the maxilla and mandible which attaches the gums to the cheeks, one connecting the upper and one connecting the lower lips to the gums, and one underneath the tongue. Variations in the insertation points of those frena, their thickness in size and their contribution to trapping liquid and food can adversely impact oral and dental development when they restrict functional range of motion within the orofacial complex (D’Onofrio, 2019).

Maxilllary labial (upper lip) ties can result in painful breast/chest feeding for the nursing parent when the upper lip is pursed or tense in order to achieve a proper seal on the areola and in doing so, prevents the infant from latching deeply (D’Onofrio, 2019; Kotlow, 2013; Benoiton, Morgan & Baguley, 2016). An overly taught labial frenum can become problematic later in life as well, when it can pull the gingival margin from the tooth or prevent the closure of a diastema (space between the teeth) during orthodontic treatment and can foster the accumulation of plaque along the gingeva and increase the rate of periodontal recession (Priyanka, et al., 2013; Stylianou, et al., 2020). Lip ties may cause central incisors (the front teeth) to rotate, separate or flare (D’Onofrio, 2019).
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Pronounced buccal frena can limit the movement of the buccinator muscles in cheeks and impact oral cavity function (Iwanaga, et al., 2017), and may contribute to the pocketing of food in oral vestibules (D’Onofrio, 2019; Rathee & Jain, 2021). The buccinator muscle benefits chewing and swallowing with its maximum range of motion and is one of the first muscles activated when an infant begins suckling. Restrictions in functional range of motion impact the infant’s ability to create a seal on the breast tissue by pulling the corners of the mouth laterally and as it can aid in the comfortable closing of the mouth (Rathee & Jain, 2021), its restriction may impact the ability to keep the lips closed at rest. When these muscles are restricted, excessive pressure may result that impacts the underlying hard tissues, thus resulting in high, narrow palatial arches and malocclusion (Rathee & Jain, 2021).

Tied Tongue

What once seemed self-evident, that the muscles in the tongue need to have optimal range of motion to function correctly is now in question by many as squabbles about where the frena should be attached, what constitutes a “normal” range of motion, or assertions that feeding is successful if the parents perceive it as such. We do know that the upper and lower insertion points of the lingual frenum, as well as the thickness and flexibility of the free tongue muscles impact the tongue’s range of motion and general oral function (D’Onofrio, 2019), and that its ability for vertical lift to the hard palate is a better measure for normal lingual function rather than the ability to extend the tongue horizontally past the incisors, as is commonly cited (Yoon, et al., 2017).
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Numerous studies in recent decades have claimed a wide variety of prevalence of ankyloglossia and other tethered oral tissues. One of the most widely cited, and therefore most commonly accepted, studies by Messner and colleagues (2000) for ankyloglossia throughout the scholarly literature cites prevalence establishes an incidence of 4.8%. This study is not definitive, however, as diagnosis was subjective and conducted without the use of a validated diagnostic protocol with proven interrater reliability; this study also involved just 36 breastfed study participants and 36 breastfed control infants (Messner, et al., 2000). It is unclear how this incidence rate can be used ethically in research when the diagnostic screening utilized by its authors was admittedly subjective in nature when standardized diagnostic protocols were available at the time, though to be fair they had not yet been deemed to be as valid and reliable at that time as they are today more than 20 years later.

TOTs Impacts

Tethered oral tissues are linked in the literature with causing a variety of problems. They adversely impact breast/chest feeding, eating, and swallowing in the baby (Cho, et al., 2010; do Rêgo Barros de Andrade, et al., 2020; Ferrés-Amat, et al., 2017; Fernando, 1998; Flavel, & Nordstrom, 2004; Forlenza, et al., 2010; Geddes, et al., 2008; Hong, et al., 2010; Hand et al., 2020; Le Réverénd, et al., 2014; McClellan, et al., 2015; Moss, 1997; Miles, et al., 2013; Parr, 2018; Pransky, et al., 2015; Rasteniene, et al., 2021; Rike, et al., 2004; & Srinivasan, et al., 2019). Many of these children also have gastrointestinal impacts, including receive reflux diagnoses and subsequent avoidable pharmaceutical treatment (Baird, et al., 2015; Bredenoord & Smout, 2007; Collins, et al. 2019; Fishbein, et al., 2013; Gonzalez Ayerbe, et al., 2019; Granderath, et al. 2007; Hand, et al., 2020; Hibbs & Lorch, 2006; Kotlow 2011; Kotlow 2016; Kotlow 2018; Lightdale, et al., 2013; Shepherd, et al., 2013; Siegel 2017; & Watson & Mystkowski, 2008).

Nursing parents experience nipple pain and feelings of helplessness (Riordan & Wambach, 2010) as well as sleep deprivation (Fernando, 1998). There is also an increased risk of postpartum depression in parents who wished to nurse their children but struggled or failed (Sá Vieira, et al., 2016; Wedad Saad, et al., 2018).
Tethered oral tissues can cause malocclusion and adversely impact orofacial growth and development (Boyd, 2011; D’Onofrio, 2019; Le Réverénd, et al., 2014; Pirilä-Parkkinen,  et al., 2009; Sari & Auerkari, 2018; & Upledger & Vredevoogd, 1983). They often lead to disordered breathing such as sleep apnea and its subsequent tonsil and adenoid inflammation (Boyd & Kelly, 2019; D’Onofrio, 2019;  Guilleminault, et al., 2016; Huang, et al., 2015; Lee, et al., 2007; Olivi, et al., 2013). Disordered sleep breathing is linked with an increased risk for ADHD diagnoses (Blesch & Breese McCoy, 2016),  a 40% increased risk for needing special education services (Besson, 2015) and suboptimal orofacial development with subsequent risk of an increased body mass index (Ozbek, et al., 1998)., poor gut microbiota and subsequent physical challenges (Sekirov,  et al., 2010), as well as postural deficits subsequent to airway protection and muscular strain (Ozbek, et al., 1998; Olivi, et al., 2015). Children born with TOTs also may have challenges with speech articulation (Baxter & Hughes, 2018; Bruderer et al., 2015;  D’Onofrio, 2019;  Daggumati, et al., 2019; Ito, et al., 2015; Kent, 2021; Lalakea & Messner, 2003; Le Réverénd, et al., 2014;Messner & Lalakea, 2002, Ostapiuk, 2006; & Walls, et al., 2014).

Assuming the frequency of ankyloglossia is the generally accepted 4.8% of the population, that would be a staggering proportion of our population impacted by that alone, even without considering other forms of tethered oral tissues. Of course, more accurate estimates of prevalence based upon reliable evidence-based diagnostic criteria are likely to be much higher than 4.8%. Diagnostic tools are widely considered to be poor (for a variety of reasons) and inconsistent. Treatment methodology and disciplinary paradigm varies tremendously and there is little discussion about how a healthcare professional can ascertain whether treatment was successful given the poor quality of diagnostic criteria available and disagreement about TOTs’ physiological ramifications.
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Research into the parental experience of trying to feed a child with TOTs is extremely limited in number and scope, focusing only on their nursing experience and related challenges. But what of babies who are bottle-fed? And what of babies who didn’t have any apparent feeding issues? Surely they are impacted by TOTs as well, and while there is literature supporting the impacts on various physiological systems, the decision of whether to perform a surgical revision of tethered oral tissues is limited by industry guidance to challenges nursing parents face. This is a subject area sorely in need of an interdisciplinary perspective that can tie together (pun intended) the research from a variety of fields in order to present a holistic view of what TOTs entail and how they impact families.

Conclusion

Clearly, this is a complex issue that cannot be resolved by seeking empirical data utilizing typical scientific methods to find direct causality. Quality randomized controlled trial studies about TOTs are incredibly difficult to produce due to the inherent binary “this causes that” quantifiable nature of that methodology, when it is clear from both historical and current data that TOTs result from a complex set of symptomologies through the body that is seldom explained as simply as a short lingual frenum.

But what about accounting for the experiences of families with regard to their symptom presentations? Can this data not be objectively ascertained from families that have received diagnoses according to various diagnostic criteria? What of those families who did not realize that the tonsiladenoidectomy their child had may have been prevented by an evidence-based release of their tongue-tie and adequate habilitation of their oral function? The ability for parents to locate multidisciplinary provider teams that have sufficient education to address all of the areas in which their families are impacted by their tethers would be a wonderful beginning. The first step in that process is to allow these parents to have a voice in the literature with the hopes that the scientific community can put their egos aside and remember that families are needlessly struggling all around the world. To date, the efficacy of typical treatment methods and the lived experiences of the families impacted by TOTs have not had representation within the literature. This is problematic, and is why my dissertation research project, The Case for Establishing Evidence-Based TOTs Management Standards: Implications for Public Health Policy has been submitted to the Union Institute & University's Institutional Review Board (IRB) for approval of my mixed-methods research project. Expected completion date is 12/20/2022.

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HO*LIS*TIC ~ADJECTIVE: Relating to or concerned with complete systems rather than with individual parts 
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