Frequently Asked Questions: TOTs for Parents

Below are answers to parents most frequently asked questions about TOTs (tethered oral tissues – tongue, lip and buccal ties):

Is this a breastfeeding thing?

Tethered oral tissues are restrictions in the lip, cheek or tongue tissue and made up of fascia (called frena). They affect oral motor development and health throughout the lifespan, specifically:

  • Ongoing feeding issues such as swallowing disorders, picky eating preferences for soft foods, difficulty chewing, etc.
  • Airway issues such as upper airway constriction syndrome, sleep disordered breathing, sleep apnea, etc. The tongue resting in its’ proper position protects the airway for life, and also plays a role in upper airway development.
  • Speech issues such as issues with pronunciation, lisps, slurred speech, etc.
  • Dental issues such as issues with dentition, caries, periodontal disease, etc.
  • Orofacial development, including impacts on jaw development, TMJ pain, narrow palate, etc.

Evaluating and decision making around revising a restriction would take into account both short and long term implications. Each family should take their time to make this decision and work with a team of professionals to get support – each family has their own timing that’s right for them. Keep in mind, if a revision resolves breastfeeding issues, it does so because it enables proper oral motor development which would be expected to have a number of positive health impacts across the lifespan. For resources that detail this information further, see:

  • This resource which describes what tethered oral tissues are all about, their long & short term health implications as well as common misconceptions.
  • This resource which describes more in detail the process of going through a procedure for parents, including pre/post op care and additional resources.

Is this a trend? Why all the rave?

Tethered oral tissues (tongue, lip and buccal ties) are real and not a passing fad. The reason for the increased awareness is improved clinical research, improved technology and greater collaborative care where specialists in different fields are noticing the widespread impact of the problem for health across the lifespan. If you were born and raised in the 70s, 80s or even 90s you likely got checked for these issues in middle school, or if you were lucky early elementary school when you already had symptoms (feeding difficulties, picky eating, breathing issues, speech issues, dental or orthodontic problems). A generational shift has now occurred where oral motor development issues are being looked at much earlier because oral motor development is now recognized as a critical foundation of health. The assessments are being done in the newborn and early infancy period, when we actually have the chance to resolve and prevent the issues from having later impacts with minimal to no intervention when the body is in the process of forming rather than when already formed with long term habits developed. This is a great shift. That being said, there are certainly opportunistic professionals and businesses as in any field and one should be wary of scare tactics, aggressive marketing tactics and pseudoscience.

My pediatrician or ENT didn't see a tongue tie. Is this something I should still worry about?

The vast majority of pediatricians and ENTs will say “there’s no tongue tie” without a proper diagnostic evaluation. They may be great pediatricians or ENTs, but unless they have specialized training they’re not typically going to be able to correctly assess ties. In addition, ties are not assessed by visibility alone – in other words, one cannot just look in the mouth, lift the tongue up and down, and say there is or is not a tongue tie. In addition, if the tie is further back in the mouth it may not be visible to an untrained eye at all. Assessment from a lactation consultant or feeding specialist will be functional in nature including mobility assessment, palpation and feeding assessment. Diagnosis requires collaborative care and further evaluation. If your pediatrician or ENT didn’t complete these steps and doesn’t work collaboratively with other specialists, then they likely didn’t assess for ties correctly.  This is expected. You wouldn’t rely on your primary care specialist to tell you about a knee injury or recovery. In medicine, there are specialists that we often need. You’ll want to see a qualified medical doctor with specialization in the area (found here) to confirm or disconfirm a diagnosis of tongue, lip or buccal ties so that you are not mislead OR misdiagnosed.

My friend's son had a tongue tie and even after the revision, they still had issues. Why does this occur?

The revision of the fascial web under the tongue, between the lip and gumline or in the cheeks is only one part of the process to a successful recovery. Bodywork is often needed before and after a procedure as well as targeted exercises such as stretches and suck retraining. Reattachment can always occur and should be medically assessed. Although helpful to hear about others experience, you may not have all the context about what occurred and what supports were in place before or after a revision in your friends’ case. It can take up to 4-6 weeks or more to see full progress, and support is needed throughout the process to ensure complete recovery. It’s certainly possible that without all of these supports in place, there may be little progress or delayed progress – particularly if reattachment occurred.

If my baby can bottle feed, why should I be worried about ties?

Keep in mind that bottle feeding also requires less skill than breastfeeding and infants may not be challenged to develop or utilize all those important oral motor skills needed for continued proper feeding as they get older. Think of it this way: feeding in early life is a lot like math in elementary school: a lot of kids can do it in those years, but as math gets harder as they progress in later school years, learning issues and gaps in skill sets become more visible. In that context, think of the breast is the word problem, and the bottle is simple addition or subtraction. That being said, there can be issues babies have with bottle feeding. A bottle feeding assessment can help you have an understanding of not just how much milk your baby is getting but how well they are feeding and what you can do to help them be more effective, efficient and develop those skills. Often, babies with ties will have issues with bottle feeding as well they just may not be as obvious to a new parent. Unfortunately, most lactation consultants don’t offer this and bottle feeding families are left along to struggle. It’s not helped by the fact that bottle companies heavily market products that don’t solve underlying feeding problems such as changing the nipple flow but these solutions are often what parents as “sold.” Our team at WBWB will always help you with bottle feeding, and we offer bottle feeding consults as separate visits or as part of your initial or follow up visit as needed.

Generally, it’s important to have any possible ties fully evaluated and consider both short & long term implications as well as work on optimizing bottle feeding.

My baby is gaining weight well with breastfeeding and/or bottle feeding. Should I do anything about the tongue tie?

It’s great that your baby is gaining well. There are certainly many babies with ties who will be able to feed adequately in terms of getting their daily intake needs met. Evaluating and decision making around ties is very individual, and it’s important to know what your baby is dealing with and how it may impact them both now and later (and what the breastfeeding parent may be dealing with i.e. nipple damage, mastitis, oversupply). For instance, a baby may be gaining well but very fussy or with a lot of digestive discomfort (excess spit up, hiccups, aerophagia) and this can get worse over time. Going to see a trained medical specialist doesn’t mean you will have to do a procedure that same day – you can take your time to understand what this issue may mean for your baby, knowing that things can change over time and infant health is not defined by the sole criteria of weight gain. In fact, never in human nutrition across the lifespan except in infancy will you hear medical doctors emphasizing weight gain, height and head circumference as primary markers of health while discounting others such as oral motor development milestones to such an extent.

My baby was assessed for ties, and we were told s/he has a "slight tongue tie." What does this mean?

Unlike other diagnostic criteria, tongue tie is evaluated by function not appearance alone. A tongue tie that appears “slight” may create severe functional issues. So, the answer to the question is, how severe are the functional issues? What a tongue tie means for your baby may take time to evaluate and ultimately requires a proper medical evaluation as well as a functional assessment by a lactation consultant.

What's a posterior tongue tie and why does it matter?

This blog post by ENT Dr. Bobby Ghaheri goes into detail with regard to what’s what when it comes to posterior ties. Posterior refers to the location of the tie in the mouth, which is in the back third section of the tongue – the tongue is divided into sections (L/R and front, mid and back). They are often not visualized unless seen by a trained eye, or difficult to visualize, but they are easily palpated and functionally assessed by a properly trained specialist. The back third of the tongue is responsible for proper swallowing as well as several other functions. A posterior tie can create the same or more issues as other ties depending on what’s happening functionally for your baby.