Our family’s journey with tethered oral tissues

In light of the recent NYTimes article on tongue ties, I wanted to give my thoughts a permanent spot on my blog. I have a lot of qualms with the article, but I’m going to refrain from going into them in too much detail here, and instead, I will share my personal journey on the topic to add a different perspective. There have been PLENTY of providers that have voiced their opinions, grievances, and critiques about this article recently, and I don’t really care to add to the noise on that and beat a dead horse. I will say, though, that the article authors’ notion that tongue tie releases are some shady money grab carried out by unethical lactation consultants, greedy doctors/dentists, and the “intensifying pressure to nurse” is ridiculous. There are some really incredible and knowledgeable lactation consultants and release providers that are making such a dramatic difference for the mother-baby nursing dyad when it comes to this issue, and they were not at all featured in the article - so it was a biased unilateral journalism piece, which shouldn’t come as too much of a surprise these days honestly…

My last thought before I get into our own family’s experience is on the article’s claims regarding the “pressure to nurse”… I’m not sure when it became a bad thing to help support mothers to breastfeed their infants. Breastfeeding has numerous benefits that nothing will ever equally compare to (sorry, formula companies). Women are biologically wired to provide this type of care for their offspring, and we should be empowering them with the resources to do so. Instead, the formula industry is being thrown into mothers’ faces, and bringing unnecessary alarm to the topic of tongue tie releases just helps support the goals of formula companies. This is a whole other discussion for another day, though.

Okay, off my little soapbox on that. Now, to tell you about our personal journey on this topic. As a provider that works with families navigating oral ties AND as a mother that navigated it with my own daughter, I think I bring a unique value to the table. I am able to relate to my clients in a way that some providers just can’t because I have walked a similar road to them and can share about my journey. I have seen it from both sides.

For a quick little background about tethered oral tissues in general, I’ll go over some terms quickly so you can more easily follow along with our story. Tethered oral tissues (TOTs) consist of tight bands of tissue/frenum/frenulum within the mouth (under the tongue, connecting the cheeks & lips to the gum line, etc. commonly referred to as tongue ties (known as ankyloglossia), lip ties, and cheek/buccal ties), and when this tissue is tight, restrictive, and negatively affecting function, it could be worth investigating whether a release of this this tissue by a reputable provider (typically a pediatric dentist or ENT) is warranted. TOTs can only be officially diagnosed by releasing providers - not OTs, SLPs, PTs, chiropractors, or IBCLCs - and good providers will assess all aspects of function and collaborate with other providers on the care team to determine if a release would be helpful. I highly recommend reading the book Tongue Tied to learn more about TOTs.

Some people, like those writing the NYTimes article, claim that TOTs are becoming a “popular diagnosis” and over-diagnosed in babies these days, especially babies that are struggling to breastfeed (because restrictive tissues in the mouth can make the mechanics of nursing very difficult for babies), but I would argue that there is just more awareness of the issue lately. Heck, I was born in the 90’s and I have an incredibly restrictive tongue tie that I now understand has caused so many issues throughout my whole life, but it was not a well known condition back when I was a baby like it is becoming now, so it was never addressed. Since I have a restrictive tongue tie, and so does my husband, I suspected my daughter might be born with one too, so it was on my radar even before she was born, and I started building a team of providers that could help me navigate the situation once she was born, if the need arose - speaking of, I have the most incredible Southern NH/northern MA IBCLC to refer you to if you’re local, and a handful of great release providers nearby, should you need one for your own kiddo; just email me and ask!

When you receive a functional evaluation for TOTs, both baby and mom should be screened for symptoms. In our case, I had a lot of symptoms (pain, cracked nipples, blanching, etc.) and so did my daughter (poor weight gain, fussiness, hiccups, spit up, clicking, prolonged feedings, poor lip seal, quivering, “milk tongue”, lack of cupping, no elevation with crying, and lip blisters), so it was very clear to me that we needed some intervention deeper than just working with a good lactation consultant to address latch. Nursing was incredibly painful for me and I found myself crying right alongside my daughter during almost every session. Truthfully, I didn’t envision our nursing journey lasting if we didn’t address her ties, and I was determined to have a long and positive breastfeeding journey. Of note, TOTs can also affect babies who bottle feed, so if functional deficits exist there (colic, clicking, reflux, digestive distress, etc.), it is worth evaluating too.

When we went for our evaluation at the pediatric dentist, it was confirmed that my daughter had level 3 (out of a 4 point scale) upper lip and right upper buccal ties, and a posterior tongue tie that were all drastically affecting her function. I keep mentioning how her ties were affecting her function because that is the key here. A tight frenum alone doesn’t warrant a release via laser or scissors, it’s when function is negatively impacted that intervention should be considered, and for babies, it is imperative that their feeding skills function optimally. There are lots of therapies and oral motor interventions that can (and should) be done before a release, but for some people (like myself and daughter), a release is still ultimately necessary to ensure maximum function - despite what the NYTimes article wants you to think. Am I saying that every tongue tied baby is appropriate for a release? No, absolutely not. Many babies are carrying excess tension and utilizing extremely poor oral motor mechanics that might make release outcomes worse if supporting therapies aren’t utilized appropriately. For this reason, if I am seeing a baby for CFT, I always like to work through some of their tension and oral motor skills before I ever recommend them for a release. After all, the floor of the mouth/base of the tongue is connected to the rest of the body through our extensive fasical network, and tightness in one area is related to tightness in another - I see lots of tied babies that have tension in their pelvis too, and that should be addressed before the tongue is released.

As a result of all the pre- and post-operative therapies we did with my daughter (CST, CFT, chiro, lactation, OT, etc.), I felt incredibly comfortable doing the release when we did at 6 weeks, and our lives changed for the better. Some benefits were immediate, and some came with time and therapy, but she was happier, gaining weight, sleeping better, and I was in less pain so I could actually enjoy nursing. My daughter turns one next week, and our breastfeeding journey is still thriving. I know I have her team of care providers to thank for this and I am so grateful.

I say all of this to tell you that if you read the NYTimes article and it scared you, please know that it was an incredibly one-sided take on the issue, and it did not at all feature the benefits that TOTs releases can have for babies and moms. I do want to stress, however, that a release is never an immediate fix, and it will not work to its fullest potential if done in isolation. Therapies both before and after a release are crucial for successful outcomes, and reputable release providers should not do releases unless you are engaged in supporting therapies to help address tension and train the oral motor muscles to function properly (therapies such as: bodywork, PT/OT/SLP, chiro, IBCLC, etc.). If you go to a releasing provider and they offer to do the release and send you on your way without ensuring you have follow-up care through other therapies, please find a different provider. Those are the types of providers that are probably just in it for the money, like the article suggests. They likely don’t care as much about you getting a successful outcome from the procedure as someone who wants you to continue with therapy.

That’s all for now! I hope this post gave you some peace of mind and direction when it comes to releasing TOTs. I’m an open book when it comes to talking about our journey, so never hesitate to ask anything that comes to mind. Please reach out if you have more questions, and give me a follow on Instagram because I plan to post more about this in the future! I do want to emphasize that if you suspect something could be going on in regards to oral ties affecting your baby’s function, but you’re just getting brushed off by doctors or family members, please trust and follow your gut. If you suspect there are functional deficits, it will benefit you to find providers who will listen to you and address your concerns. Remember, at the end of the day, YOU know your baby best, and only YOU can decide what is best for them - definitely don’t take advice from the NYTimes ;)