Tongue tie: One IBCLC’s moderate approach

This topic is a long time coming to this blog, and for a simple reason: I’m not itching for a fight about it. However, I have reached peak tongue and lip tie, and so I’m donning my flame-retardant suit and throwing this out into the world.

Tongue tie, lip tie, and normalcy of the frenulum

A frenulum (plural: frenula) is a fold of tissue or membrane that secures and connects one part of the body to another. There are several different places in the body that have frenula. A frenulum, in and of itself, is normal; the absence of a frenulum where there should be one is abnormal. Since we’re all wonderfully unique, our frenula are different and there is a wide range of normal. Sometimes, these frenula, which are meant to be restrictive to a point, are restrictive to a degree that impedes our normal bodily functions.

This frenulum wants you to know that it’s not a “normal” frenulum. It’s a badass frenulum. (Photo credit: Jason Matthews via Flickr Creative Commons)

“Tongue tie,” also called “ankyloglossia,” is the name given to a lingual frenulum that is too restrictive. Some other terms are “tethered oral tissue” or “oral restriction.” Tongue tie prevents a tongue from moving out, in, up, down, sideways, or in a wavelike motion. The tongue does this, and more, to breastfeed as well as perform other functions. Likewise, “lip tie” refers to a frenulum that is restricting the function of the lip. To make things more complex, there is a condition referred to as “posterior tongue tie” where the lingual frenulum is not visible without a manual examination. An anterior tongue tie is readily visible. Awareness of anterior tongue tie is higher, as this is the type that has been treated—often successfully—for hundreds, even thousands, of years; posterior tongue tie is a new idea and a controversial one. Dr. Pamela Douglas wrote this critique of posterior tongue tie diagnoses and treatments in the journal Breastfeeding Medicine in 2013.

One way to regain restricted function is to “revise” or “release” the frenulum, which is done by cutting with a scalpel, snipping with a scissors, or separating with a laser. Some other proposed methods for regaining function include occupational, physical, suck/feeding, massage, chiropractic, or craniosacral therapies.

Sounds simple… but it’s not

We’re far from reaching a consensus on the issue of tongue and lip structure and function. This can create confusion for families, unfortunately, as different providers may say different things. Some care providers don’t believe that a frenulum could ever cause breastfeeding issues, or that tongue tie always looks like a “classic” heart-shaped tongue. On the other end of the spectrum, some people may be overzealous, suggesting or diagnosing tongue or lip tie based on appearance or a description of symptoms alone, and sometimes before families see an IBCLC for a thorough assessment.

A lack of common language is another difficulty. There are a few tools that doctors, dentists, lactation consultants, and other care providers can use to categorize or grade tongue tie. Only one, the Hazelbaker Assessment Tool for Lingual Frenulum Function (HATLFF) assesses structure and function; the others focus on structure, and none of them have been studied extensively. Even if care providers are discussing tongue tie, they may be using different terminology or criteria.

Social media adds to the complexity of the issue. E-diagnosis of tongue and lip tie runs rampant. The internet has allowed us to reach out to others to share symptoms and photos, and when it comes to breastfeeding, “get assessed for tongue and lip tie” is a common response. This in and of itself is not necessarily problematic, but without qualified lactation help, assessment of function cannot be complete.

Facebook in particular has brought many people together under the umbrella of education about tongue tie. “Tongue Tie Babies Support Group” has over 43,000 members as of the date this post was published. Local branches of Advocates for Tongue-Tie Education have spread across the globe, with one of their key projects the establishment of preferred providers. Preferred providers are those the group trusts with diagnosing, fixing, and managing tongue and lip ties, but the trust tends to erode if you do not diagnose or revise often enough. A preferred provider may suddenly find themselves not “preferred” if they do not agree with group members’ suggestions. Lactation professionals (myself included) have been removed from groups for suggesting that issues shared by group members may be attributed to something other than a tongue or lip tie.

Diagnosing tongue and lip tie

IBCLCs cannot diagnose in the medical sense of the word, although we are often the ones who perform oral assessments on infants and share our observations with care providers who are charged with diagnosis and treatment. For a tongue tie diagnosis to be accurate, it must take into account both what the tongue/lip/mouth/frenula LOOK like and what they can DO—form and function. In addition to assessing with a tool, a feeding should be thoroughly observed and other, smaller interventions (such as repositioning parent or baby) are often all that is needed.

Some symptoms of tongue or lip tie include sore nipples, slow weight gain, low milk supply, unresolving/chronic plugged ducts or mastitis, difficulty latching or maintaining a latch, difficulty handling milk flow, and excessive gas or spitup. However, these are also symptoms that could be explained by other things, including feeding position. This short video shows how much of a difference positioning can make—and how you don’t need a flanged upper lip to breastfeed well. The tongue does the bulk of the work of breastfeeding.

Classifying tongue and lip ties by appearance is described by Dr. Lawrence Kotlow. Kotlow says, “The ability of the tongue to properly function and have good mobility is included in the diagnostic criteria,” but goes on to describe normal variances in attachment location of a frenulum as a “tie.” Looking at the photos, it would be rare to find a baby who does not have what would be classified as a Class I, II, II, or IV lip tie.  Creating classification systems of “ties” based on appearance yet saying that a tie must impede function as well is inconsistent and confusing. Lip tie is diagnosed often, but is rarely an actual issue.

What a frenulum looks like only tells part of the story. I have worked with many families for whom what was needed was not a procedure but positioning help. I have also worked with families who have had tongue or lip ties released (sometimes several times!) with no change or a worsening of previous symptoms, and sometimes these families had not had lactation help outside of their initial hospital stay.

Interventions without evidence base need to be used carefully

Frenotomy carries with it risk that is sometimes downplayed. Particularly when it comes to revision of posterior and lip ties, as well as multiple revisions in the same location, less-discussed risks include:

  • Pain for baby
  • Pain for parent because underlying positional/latch issues are not addressed
  • Underlying issues (such as torticollis or neurological conditions) not being addressed in infants
  • Breast refusal/oral aversions
  • Emotional distress for parents and infants

There is risk with failing to perform frenotomies when appropriate. We have evidence that scissor revision of anterior tongue ties can reduce pain for mothers and lengthen breastfeeding duration. This is not the case for revising posterior tongue ties or lip ties, or using lasers. Dr. Douglas, in her journal article, states:

Clinical observation and teaching concerning ‘‘posterior’’ tongue-tie have had the benefit of raising our awareness of the frenulum and of alerting us to the importance of impaired  tongue function in breastfeeding. I argue, however, that if an intervention is instigated in the absence of an evidence base, and particularly if this involves a procedure in babies, it is essential that we carefully test the theoretical frames, or lenses, that we are applying.

Dr. Alison Hazelbaker further examines the ideas of posterior tongue ties and lip ties in this post. [Note: While I agree with much of what she says, I also find it difficult to swallow (no pun intended) her insistence that craniosacral therapy is beneficial and an evidence-based practice. It isn’t.] She concludes:

Time and more research will tell us what is true and not true about this phenomenon. Until then, we must exercise healthy skepticism, continue to ask the hard questions, engage in respectful dialectic and err on the side of caution. Our vulnerable babies depend on us to keep them safe from harm, and that includes holding off on surgery if no evidence exists to put them through such surgery.

Our egos must learn to stand the strain of not knowing.

The answer is in between

My viewpoint—which can and will change based on new experiences and information—is a moderate one, and can be summarized in a neatly formatted bulleted list:

  • There are times when an anterior tongue tie is obviously causing difficulty that will not likely be resolved without revision. Sometimes these are revised poorly or not at all, whether due to a provider’s inexperience with the procedure or belief that it doesn’t matter, and that is a shame.
  • As far as posterior tongue ties go, they’re more frequently diagnosed than they should be, and that goes for lip ties as well. This doesn’t mean that posterior tongue tie and lip ties do not exist.
  • Almost every parent I meet needs help with positioning, and that is partly because the old, unhelpful ways of teaching breastfeeding are still widely taught. Good positioning very often leads to good latching. If a baby is not capable of latching despite interventions, or the minor interventions are not working over time, tongue tie is one reason why this may be the case.
  • Babies need to breastfeed well in order to continue to breastfeed well. If latching is suboptimal, breastfeeding is interrupted with separation, introducing artificial nipples or nipple shields interfered with breastfeeding, milk supply is low, or many other possibilities, a baby may not get to move her lips, tongue, chin, head, or body in a way that makes sense for learning how to breastfeed. The longer this goes on, the longer it will take to reverse.
  • Babies’ facial structures (and entire bodies) change rapidly in the first weeks and months. It is difficult to judge what permanent solutions (i.e., frenotomy) may be appropriate when growth is imminent. This applies in particular to lip ties; the upper gum changes dramatically over time.
  • “Compensations” at the breast aren’t necessarily a bad thing. Humans are immensely adaptable. That’s kind of our superpower.
  • Sometimes we don’t know for sure what is causing a baby to have a poor latch. Sometimes we try different therapies, such as occupational therapy and suck training, and they don’t work. Sometimes a baby has a revision, or two, or more, and nothing changes or things get worse. Outcomes can be unpredictable, and surgical procedures on babies who are already not doing well at breast increase the chances of oral aversions developing.
  • When we do multiple things to attempt to fix an issue, it’s hard to tell which intervention or combination of interventions helped. We hear praise for frenotomies, but what other things were done? Lactation support? Improving milk supply? Time?

Frenectomy, whether by scissors, scalpel, or laser, is not an insignificant intervention, particularly if revisions are done and re-done. Dr. Douglas describes—and my professional experience echoes—that some babies have revisions, sometimes multiple times, that can do more harm than good. While clinical judgment and parent preferences can play into the decision to offer and accept a frenectomy, all of the risks need to be weighed, including the possibility of the procedure not working, and even that it may not be necessary in the first place.

Further reading