TOTs: Tethered Oral Tissues

What’s are TOTs?

Frenulum diagnosed as ankyloglossia by pediatrician based on functional assessment (inability to latch)

Tethered oral tissues (TOTs) refers to restrictive tissue in the mouth that impacts how you are able to use your mouth. The medical term for a tongue tie is ankyloglossia.

The mere presence of a piece of tissue (frenulum) under the tongue, lips or around the cheeks does not mean some one is “tied”. A tie negatively impacts the function of your body.

TOTs can negatively affect breastfeeding/chest feeding, bottle feeding, chewing/swallowing, speech, sleep, breathing, and body movement or posture. There are many symptoms of TOTs and not everyone will have the same symptoms!

It’s so confusing!

Parents often hear conflicting information from healthcare providers. TOTs are not part of the curriculum in medical or dental school or even some lactation programs.

Providers must have a special interest and seek out TOTs classes and continuing education on their own. This is one reason the TOTs road can be a very confusing journey. A well-meaning practitioner may dismiss classic TOTs symptoms without realizing it. Continuing education is necessary for anyone assessing for ties.

I have taken many classes and spent countless hours in the tongue tie world in order to provide you with the most current information. My goal is to clearly communicate what I see during a latch and physical assessment in order to help clarify the cause of feeding difficulties. Identifying and correcting the root of the problem can help improve the symptoms.

The hospital provider said there was no tie

At birth, there can be a lot of body tension that, after the baby unwinds in the weeks after birth, allows the frenulum to become more visible and the symptoms more noticeable. Obvious symptoms of a tie are not always present at birth. If you’re every unsure about your baby’s oral function or there doesn’t seem to be an explanation for why your baby won’t latch, see an IBCLC skilled in TOTs for a full evaluation. “My nipples aren’t long enough” or “my breasts are too small” or “some babies just don’t latch” are NOT explanations for a non-latching baby. All babies are programmed to breastfeed and if they’re not able to latch, it’s the IBCLCs job to explore why.

Surgery??

To release or not release? The answer is not always easy. A tongue tie label does not mean your baby is destined for a surgical procedure. Though a frenotomy/frenectomy (procedure to release restricted tissue) can be helpful for many babies with TOTs, some families prefer to avoid surgery.

The most important part of the tongue tie journey is to address each family’s individual needs and goals.

Bodywork/manual therapy (infant massage, craniosacral therapy, chiropractic, therapeutic tummy time, etc.) is an essential part of optimizing infant feeding. If the floor of the mouth is very tight, it is important to help this tissue relax with body work and oral exercises. For some babies, this relaxation improves feeding enough to avoid surgery (it does not make a restrictive frenulum looser, just the surrounding tissue). But, if a frenotomy is needed, having bodywork done prior to the surgery can help the provider see the restrictive tissue more clearly and prepares the baby for surgery which results in a better release.

MY BABY HAD SURGERY AND WE STILL HAVE FEEDING PROBLEMS…

Same baby as above; initial release was incomplete and restrictive tissue continues to inhibit full tongue function.

This is a common problem. Usually babies need mouth exercises to help improve their strength and coordination with their newly mobile tongue. Releasing the tie is only part of process.

Working with a TOTs savvy IBCLC is important because they can assess your baby’s oral function and show you exercises specific to your baby’s needs. It is important to do these exercises even before a release.

How long do you need to do exercises? It depends on your baby’s needs and how often the exercises are done. Your IBCLC can often give you a general timeline based on your situation.

The other thing is, sadly, sometimes the release is incomplete. This happens quite frequently. If only the clearly visible (anterior) portion of the tie is released, the back (posterior) part of the tie remains restrictive and feeding difficulties persist.

The person doing the procedure needs to understand what a full release means and how a tie affects feeding. A quick snip without a visible diamond shaped wound is likely (but not always) insufficient. It’s important to assess a full feed (start to finish) and examine the baby’s oral skills prior to releasing the tie.

Pediatricians, naturopaths, ENTs, and dentists are often the professionals who release TOTs. However, they should only be releasing after a feeding specialist with TOTs training has determined the tie is impacting oral function. Releasing providers do not have a sufficient amount of time or skill to assess how feeding is going for the parent and baby. Only the IBCLC assesses both.

Please see an IBCLC who specializes in ties before having any procedures done. You will see more improvement if you are receiving pre and post procedure feeding care, rather than only post procedure care.

What are signs of a tongue tie?

This list is not comprehensive. Checking some of these boxes does not mean your baby has a tongue tie. Putting these symptoms together with a physical assessment are the key to identifying TOTs. It’s very important to have a comprehensive feeding evaluation and a hands on assessment.

If you read this list and think your baby might need feeding help and live in the Portland area, you can schedule an appointment with me.

If you live in the area and aren’t sure if you need a full consult, you can register for the Nourish Feeding Group to help decide if a full appointment is necessary. If you end up scheduling an appointment, after the group you will get a $20 discount on your home visit.

If you live outside the my service radius, I can help you find an IBCLC in your area who has these skills.

Baby Signs

  • Latch difficulty, gumming or chewing

  • Weak or excessively strong suck

  • Suck blisters, swollen lips or two-toned lips post latch

  • Clicking or slurping sounds at breast

  • Gulping (noisy swallows), coughing, gagging, squeaking while feeding

  • Baby not getting full at breast despite sufficient supply or over supply

  • Open mouth posture, drooling at rest

  • Infrequent swallowing after initial let down

  • Parents working to keep baby awake at breast

  • Irritability, “colic”, or a “high needs” baby

  • Difficulty in tummy time

  • Slow weight gain or losing weight; failure to thrive

  • Reflux, spitting, up, only falling asleep when upright

  • Constipation, firm tummy, gassy

  • Prolonged feeds with only occasional swallowing

  • Getting sleepy within a few min of starting to feed

  • Falling asleep at breast without taking a full feed

  • Waking up to feed again before expected (typically less than an hour)

  • Breast or bottle sliding in and out of baby’s mouth (like a trombone)

  • Deep latch initially but baby consistently releases in order to latch shallowly

  • Leaking milk during breast or bottle feeds

  • Post feed jaw or tongue quivers

  • Heart shaped tongue or obvious lingual frenulum

  • Unable to hold a pacifier or needs stuffed animal on the end as a weight

  • Noisy breathing, snoring, congestion or mouth breathing

  • White coating on tongue

  • Head turning preference

  • Stiff body posture or rolling earlier than expected

  • Frequent or recurrent ear infections/colds

Parent Signs

  • Persistent, consistent nipple pain

  • Nipple is pinched, creased, bruised, or damaged after feeds

  • Only able to feed comfortably in one position due to latch pain

  • Breast pain or vasospasm (white nipple tip post feed)

  • Low milk supply

  • Recurrent plugged ducts or engorgement

  • Recurrent mastitis or diagnosis of breast yeast infection

  • Frustrated with feeding

  • Exhaustion due to lengthy feeding routine

  • Weaning before you are ready because of feeding difficulties

  • Postpartum depression or anxiety, particularly related to feeding

Need more info? Check out my Lactation Preparation course for additional TOTs resources. There you’ll find resources listed by media type: books, podcasts, videos, websites, social media. And it’s not just TOTs specific. There’s lots of info about lactation, sleep, and infant development, too!

If you found this information helpful, please share it!

Updated 9/23/23