Experts in oral abnormalities, suckling dynamics and lactation join up for a talk centered on ankyloglossia, an increasing common diagnosis often blamed for feeding issues in newborns. The speakers address the controversy over frenotomy as an intervention, offer the evidence on tongue-tie as a contributor to a variety of postnatal conditions, and describe their multidisciplinary approach to determining the cause when babies struggle to feed well or mothers experience nursing-related pain or dysphoria. They cover everything from the lingual frenulum’s normal structure to the evidence on frenotomy outcomes to simple, proven measures that enhance breastfeeding.
All right, thanks so much for that introduction, Lauren. Um, it is great to be here. I'm gonna actually go back to Let's see. Beginning of the slides here. All right, um, so I'm Grace Bonnick. I'm one of the, um, the assistant professors in the division of Pediatric Otolaryngology here at UCSF, as Lauren mentioned, um, I'm joined by a couple of my colleagues that Lauren introduced as well, um, and today we'll be speaking about tongue ties, um, everything you wanna know about it, uh, and more, um, and, uh, so we'll be talking about kind of the, the full range from diagnosis to management. Um, we have no disclosures. And the objectives of our talk today are um primarily to, first of all, understand the pathophysiology of, um, of tongue tie or ankyloglossia, um, and, uh, and then to describe the diagnostic tools and the criteria that we use to, um, to define it, um, and diagnose it and then explain the management options and the associated risks and benefits for those. Um, and finally, to know which patients to refer and where to send them to. So, um, you know, many of you may have seen this, uh, this article in The New York Times that came out that kind of caused a big splash, um, uh, back in December of last year. Um, it was settled inside the booming business of cutting babies' tongues, um, and it was sort of this expose that highlighted a lot of the current controversies in, um, the care of patients with tongue tie and breastfeeding difficulty. Um, I think one of the, the, um, One of the things that it, uh, it kind of opened the discussion on um was this sort of increasing evidence that suggests that there's um a sort of an intersection that we're at right now where there's widespread breastfeeding difficulty as the um as the popularity of breastfeeding is back on the rise. There's um at the same time. This kind of over diagnosis of tongue ti or ankyloglossia um as one of the main etiologies of that and then there's, um, subsequently a large number of unnecessary phrenotomies that are being performed. So those are things that we are going to kind of discuss in further detail and address today. Um, we actually, about a year ago, um, before that article was published, um, started some efforts at UCSF to kind of address this, um, these issues, um, and we have had, um, a multidisciplinary infant feeding program, um, since March of last year, um, that was designed to kind of consolidate, um, and elevate. level of care that we're providing to patients who are being referred for ankylos glossia. Um, we were seeing a huge increase in volume of referrals for this to um our OHNS uh department and then um we wanted to figure out how We could be providing the best patient care um experience at the very first visit, so to provide the most effective care, the most efficiently. We were seeing that the majority of our patients that had been referred in the past um had multifactorial breastfeeding difficulty rather than a single cause, and they actually did not end up getting a phrenotomy with us. Um, and then we have, um, we sort of tapped into this unique resource that we have in Alison and another um of our double certified speech pathologists and lactation counselors who kind of that dual perspective on both the maternal and infant um side of the breastfeeding experience, um, and you know there's a lot of evidence out there now that really supports that multidisciplinary care in general, um, aside from in tongue tie, but um it has, uh, it tends to improve outcomes um in care, um, and then in with respect to tongue tie in particular, it actually reduces the number of unnecessary phreotomies performed. Um, this study out of New Zealand, um, is, uh, part of that kind of evidence base, um, about multidisciplinary care for tongue tied. Um, they actually looked at, uh, what happened when, um, they developed this program, uh, in this, um, area called Canterbury, um, and then compared that to, um, the rest of New Zealand. And they found that after implementation of their program they saw a sharp decline in the percentage of patients who were getting phrenotomies, and yet they saw that the rates of breastfeeding actually increased slightly despite the decrease in the number of phrenotomies, whereas in New Zealand more broadly the breastfeeding rates were declining. So this is what we used to do when we had patients referred to um OHNS prior to our multidisciplinary program uh for tongue tie. So we would kind of differentiate them be it based on their age, if they were generally under the age of 6 months and having like severe difficulties such as failure to thrive, um, you know, growth restriction, then they would be seen in our um OHNS clinic on kind of an urgent basis, usually around less than 2 weeks, um. And then if they were older, if they were growing well, if the main concern was a speech issue, then they would be seen routinely by us, which sometimes, you know, takes up to a few months to get in to see us. Now with this new multidisciplinary program, we've actually been able to um to not only provide more comprehensive care but um in a more uh expedited fashion. Um, and so, When you place a referral to OHNS for ankyloglossia, um, the first thing our schedulers are gonna do is actually obtain pre-authorization, um, for them to see both of our, uh, both our speech language pathologist and, um, the OHNS providers. Um, they undergo, uh, everyone undergoes an initial comprehensive evaluation of They're breastfeeding with our speech language pathologists, and that's often done within a few days because they have dedicated spots for patients who are being seen under this multidisciplinary program. Um, and, and then there's a few things that can happen. So either they have resolution with that visit, um, other issues with, um, their breastfeeding difficulties, um, some of them require additional, um, intervention and, um, and visits with their speech pathologists, um, and then others have a concern for true tongue tie, um, and those we actually can sometimes see, often can see same day, um, in the OHNS group, um. And uh rather than having them come back for a separate visit, um, and, uh, and then if they have um concerns for um potentially maternal lactation issues that are causing their breastfeeding difficulties, then we will refer them on to Dr. Yang. So, um, if we kind of Now just talk about tongue tie in general, um, and, uh, and what it is. Um, I think there is a lot of gray area here, um, but the definition that we use, um, in, in OHNS and in our literature is that it's a condition of limited tongue mobility. Um, that is caused by a restrictive lingual frenulum. We'll talk a little bit more about the criteria that go into defining that, um, later on, but, uh, a few things I wanted to point out is, um, that the incidence of ankyloglossia ranges in the literature from like 1% or less than 1% up to 11% of all babies that are born. Um, interestingly, there has been an over 800% increase in the diagnosis of ankyloglossia over the past couple of decades. Um, now, you might think, how does that make sense? Is ankyloglossia all of a sudden a new problem that Um, affecting babies that was not present before doesn't make a whole lot of sense. Um, you know, I think the more likely explanation here is that we are starting to find cases of tongue tied and ankyloglossy a lot more commonly related to increased awareness. Um. Uh, and also, you know, sort of the, the changes in information that's available regarding this. Um, it is associated with breastfeeding difficulty in, um, a huge range, uh, from 25% of babies to 80% of babies who are diagnosed with ankyloglossia and so, um, this just highlights kind of the, the degree of, of grayness that exists in this community. Um, so if we then Kind of talk about what is, um, you know, what is the anatomy behind a tongue tie. So I want to first and foremost say that a visible lingual frenulum, so that band of tissue that's under the tongue, um, is completely normal. Everyone has one. there is also a very, very wide range here of, of normal, and it's not purely the appearance of it that matters. Um, when we, uh, look at this, um, you know, kind of when we look at the frenulum. One of the main things that we look at is the attachments and so it generally attaches to somewhere along the ventral tongue and then uh to the floor of mouth. Um, in studies that have looked at um cadavers, uh uh frenulum. Um, they have found that it's actually not a single band of tissue that creates this renulum. It's this entire layer over here on the right sided diagram, this green layer that's under the red layer that represents the mucosa of the floor of the mouth. It's this green layer that's a. band that connects to this genioglossus muscle here and other structures in the floor of the mouth that runs the entire length of the floor of the mouth, and what happens is when you elevate your tongue, then it puts that on tension in that sort of area that attaches to the tongue, the ventral portion of the tongue, and that creates the appearance of a band. Um, there's variable thickness and composition to, uh, this fascial layer in people, and we think that that contributes to some degree on whether people have a true, um, tongue tie or not. Um, I also want to kind of, um, mention that there are a lot of other ties out there, um, that are talked about and, um, in terms of what is supported by high quality evidence, which is actually quite um sparse in, uh, in In this area, um, there is definitely no high quality evidence to support the existence or a functional implication for number one, a posterior tongue tie. There's some, uh, there's a lot of kind of terminology around anterior versus posterior tongue ties, um, but, uh, there isn't any evidence that supports that there's something called a posterior tongue tie. Typically that's actually, um, the normal attachment of the floor of the mouth to the. to the tongue and is just a normal anatomical structure and doesn't have any functional implication. Other oral ties such as, for example, labial or upper lip ties and then buckle or cheek ties are also commonly talked about and diagnosed these days, but there's actually no evidence to support that these are true ties that affect, you know, anything ranging from dentition to feeding in children. And then there's a lot of things that are associated or attributed to tongue tie. Some of them are evidence-based, the majority are not. So the things that have been shown in the research to be associated with tongue ties are maternal nipple and breast pain, maternal nipple and breast irritation, ineffective watch, and failure to thrive in severe cases. The The column on the right are all things that are often attributed to tongue tie such as poor milk supply, breast engorgement, um, breast or bottle refusal, difficulty when transitioning to solids, gassiness, fussiness, speech delay, articulation disorders, um, as well as, you know, uh, more serious medical issues, obstructive sleep apnea, um, and then changes to like the oral facial structure. Um, but there is, again, there's no evidence that actually supports that these can be caused by tongue tie. Um, often these things are multifactorial, um, in etiology, and so it's, uh, really, really important to not just say, oh this is related to the fact that they have a tongue tie and then stop pursuing other possible etiologies that could be contributing to them. Um, these are some of the, uh, differential diagnoses that we think of, the most common ones that we, uh, think of when we have someone who presents to us with breastfeeding difficulty. Um, there's the maternal side of things and the infant side of things, and on the maternal side, um, Dr. Yang will be discussing a lot of these later on, um, and so, uh, you know, but there's, um, probably most commonly issues with maternal low and oversupply, um, as well as, uh, various etiologies of like nipple pain, um, and then, uh, and then a whole host of other disorders that again Dr. Yang will talk about in greater detail later on. Um, on the infant side of things, which, um, Allison will be discussing, uh, in some detail, um, there's, you know, just generally reduced oral feeding skills, sometimes in early, um, babies who are even, you know, slightly preterm or early term, they can have just reduced feeding feeding skills. Um, those that are certainly premature, um, are, uh, at risk of having difficulty with breastfeeding, um, if they have underlying reflux. And then if they have any sort of like airway abnormality such as nasal obstruction from a corneal aresia or if they have like severe congestion related to turbinate or adenoid hypertrophy, if they have any um sort of uh upper airway pathologies such as laryngalacia, vocal fold issues, if they have craniofacial abnormalities, so cleft palate or if they have a small jaw, um, and then underlying hypotonia or cardiovascular disorders can also contribute to difficulty with breastfeeding. So I'll turn it over to Allison now to um discuss a little bit further about the underlying physiology of breastfeeding. Thanks, Grace, and um, so in the past, there have been two traditional theories of how the milk is extracted from the breast. One is sucking, emptying the breast by sucking using negative intraoral pressure. The other one is mouthing where primarily emptying the breast by compression. And so Elot and colleagues actually used some mental ultrasound guided imaging to obtain objective dynamic analysis of the infant's oral cavity and the dynamic characteristics of the tongue during breastfeeding. Um, and so in this slide here, I want us to, it's a video, and I just want to orient you that the red line is the palette, so where it says before registration and after registration, they use the hard palette as a form of reference because the hard palette doesn't move, and it helps them outline other structures. In the in the infant oral cavity. And so the green line is the tongue, and when we play this video, I want us to play to pay particular attention to the back of the tongue. And so what they found was that there's a dynamic synchronization between essentially three main components, oscillation of the infant's jaw, rhythmic motility of the posterior tongue or the back of the tongue, and the breast milk ejection reflex. And so what they found was that the peristaltic wave of the back of the tongue, as well as changes in the volume in the infant's mouth due to the jaw movement is likely the predictor of pressure um generator fluctuations in the breast tissue. And so we can see here that really the front of the tongue is mostly anchored. To the jaw and the back of the tongue, um, is moving in a peristaltic wave. So this is a general outline of what our speech language pathologist and certified lactation counselor evaluation will look like. We take a detailed case history, we wanna know what the current breastfeeding support is, and we wanna know what the previous breastfeeding support was. We conduct a thorough oral mechanism exam, looking at oral reflexes, the appearance and function and function of the lips, palate, the jaw, and the tongue. We look at oral feeding skills, both with bottle feeding and with breastfeeding. From there with bottle feeding, we can try specific modifications that could be more appropriate, for example, flow rate or a particular bottle type that will optimize nutritive sucking skills. If there's a concern for feeding difficulties or if there's overt signs of airway protection deficits, then we can consider an instrumental evaluation. We look at oral feeding skills at the breast as well. Are there positions that can optimize a deeper, more asymmetrical latch that we can trial in the evaluation? So, overall, there's a lack of accepted definition and classification of angleglossia, and there are scales out there that are utilized, however, it's mostly looking at the appearance, and in our clinic, we utilize objective assessments that are rooted in high levels of evidence. The first thing that we have our postpartum mothers fill out is the breastfeeding Self-efficacy scale. It's a 5 point Leichardt scale that ranges from 14 to 70. The higher the score, the higher the level of self-efficacy. We also use Jenny Ingraham's team out of the University of Bristol. They devised an effective measure called the TBY or the tongue tied in breastfed baby assessment, to assess tongue mobility and function with the hope to streamline intervention and recommendation for surgery. This assessment has 12 images of the tongue, specifically attachment to the gum line and limits of tongue mobility. Scores range from 0 to a maximum of 8. Score of 8 indicates normal tongue function, 6 or 7 is considered as borderline, and 5 or below suggests an impairment in tongue function. The BBAT or the Bristol Breastfeeding Assessment Tool, focuses on breastfeeding within four specific areas positioning, attachment, sucking, and swallowing. Scores range from 0 to a maximum of 8. The lower the BBAT score indicates that advice on positioning and attachment is needed. The higher scores are for those who are doing well with positioning and attachment, and this tool was designed to help professionals understand where their input was needed. Going further into positioning, biological nurturing, it's a neurobehavioral approach that encourages breastfeeding diets to feed in a laid back position. And there was a randomized control trial study that was done by Molanco and colleagues, and they looked at over 100 women to assess the effectiveness of biological nurturing, and they compared it to usual hospital practices and the frequency of breast problems. And what they found was that biological nurturing significantly reduced the risk of breast problems, including cracked and sore nipples. Furthermore, there was a retrospective study done in Australia to identify potential risk factors for nipple trauma and breast engorgement in a group of women that were referred to an in-home breastfeeding service postpartum. What they found was that out of 653 1st home visits, 62.9% had nipple trauma as the most common presenting complication that they found that was associated with commonly taught techniques that involve the cross cradle hold. Shaping of the breast and nipple, and physically putting the hands on the back of baby's head, that resulted in nipple misalignment and also restricting movement and alignment of the infant. The other thing is that when providers are physically putting their hands on the mother, there's a potential to have. Negative outcome in that stage. Yeah and decrease levels of self. Allison, we're having some issues hearing you. Um, would you mind going back to that last slide? Can you hear me now? Yes. OK. I think just the last part about um the physical support from providers. Um, OK, so, um, and all of this is well intended, but sometimes when providers physically put their hands on the mom to either help shape the breast or help bring the infant to the breast, it can have the potential to send the message to the mom that they aren't able to do it themselves, and so that has the risk of lowering their confidence and also levels of self-efficacy. Um, so, you know, Allison just covered some of the things that she does in the evaluation and then the management of, um, of babies in our multidisciplinary program. Um, if When our speech language pathologists have completed that evaluation and, um, uh, and their initial guidance, um, there's a concern for a true tongue tie, um, that is, uh, abnormal in, um, you know, abnormal in its structure and then affecting function. Um, then they are often seen, like I mentioned, same day, um, by an OHNS provider who can perform, um, uh, phrenotomy. Um, so the phrenotomy that we do is a simple division of the lingual frenulum. Um, it can be performed in clinic if they're under the age of 6 months, um, or if they're older than that, we generally require sedation, so we'll take them to the operating room. Um, there's a lot of different techniques out there in the literature and that different providers use ranging from just simple scissors, um, to using cautery to using lasers. There's actually no evidence to support that there is a difference in outcomes, um, based on. The technique, um, and so, um, at our practice at UCSF, the majority of us are using simple, uh, cold steel techniques with, um, with scissors to, uh, just snip the, um, snip the anterior portion of the, um, frenulum, um, and divide the, uh, the tunga that way. Um, there's also a bunch of different, uh, ways to kind of, um, release the tongue that are out there. Uh, there's a simple release that I just described which is called a phrenotomy, um, for, uh, for general understanding, there's also, um, something called a phrenulectomy which is a full excision of, um, Kind of triangular area under the tongue and then there's also techniques that rearrange tissue and suture in the in the floor of the mouth called phrenuloplasty, but again with these various complexities of techniques there is no evidence to support that there's a difference in outcomes. Um, if we do look at the studies that talk about, um, using phrenotomy or, um, any of those techniques described in, uh, babies with ankyloglossia, the evidence quality is generally very poor. The majority of these studies are small or retrospective, they're single arm without a control group. Um, they are non-randomized. Um, a lot of them allow switching, so after a short period of trying, um, non, uh, surgical interventions, sometimes as short as like, you know, 48 hours, they'll allow, um, families to switch to, um, to a surgical intervention, um. Which I really think is kind of an inadequate amount of time to um allow for them to um to uh to try the non-surgical interventions um or they have inadequate follow-up and so they aren't following these babies um long term enough to tell if they actually do have um uh a sustainable change in their breastfeeding success. Um, there was a big Cochrane review that looked at this topic, um, and found that really the only, um, variable that was, uh, associated with, um, performing a phrenotomy that, um, uh, improved was a short-term reduction in maternal nipple pain. So there was no improvement in things like latch, there was no improvement in things like, um, the amount transfer, there was no improvement in breastfeeding rates, etc. Um, there are complications even though this procedure is, uh, generally quite safe and, um, minor, but there are um complications that can arise and so we have to weigh the risks and, uh, benefits here. Um, some of those complications I would say the most common one is oral aversion because you are doing, especially if they're awake in clinic, you're doing a procedure that can cause, um, some degree of trauma in a baby that may not have an established breast. Feeding relationship, um, and, uh, that can lead to oral aversion. You can get scarring, um, and, uh, and, uh, worsened tethering of the tongue to the floor of mouth. You can get airway obstruction, particularly in babies who have undiagnosed underlying airway issues like laryngomalacia or, um, you know, retroathia. Um, you can cause damage to the salivary ducts which open right next to the, um, lingual frenulum. And then it can cause um common things like bleeding and infection as well. So then, um, you know, to wrap things up, um, I kind of wanted to close with, um, you know, uh, a note of caution, um, I would say, and, uh, I think everything that we talked about today, um, is really to, um, to show that There is high quality evidence in some situations, but there's a lot of low quality evidence um that um is out there regarding um tongue tie and ankyloglossia. Um, there is no evidence that really supports um the efficacy of like oral motor therapy, craniosacral therapy, myofascial release, other chiropractic interventions that are often um out of pocket. Um, and this diagram here shows that there's this huge discrepancy between, um, the diagnosis of tongue tie in patients who have private insurance and Medicaid, and I think that really highlights, um, this, uh, component of, um, of, uh, socioeconomic status and, um, ability to pay that goes into the, um, You know, the diagnosis of tongue tie. There are, in addition to insurance coverage, a lot of differences in the cost of payment or cost to the patient actually for services related to the diagnosis of tongue tie, huge differences in management recommendations and follow-up needs depending on who they're going to and what practice setting that person is in. Um This is the preliminary kind of outcomes after a year of having this multidisciplinary program at UCSF. Um, we have, uh, have seen a marked decrease in the number of babies that are getting, um, some sort of surgical intervention down to about 17% of patients. Um, we have seen a huge increase as a result of, um, opening up visit spots, uh, that were previously going to. Babies that were coming in with the diagnosis of tongue tied, um, and so we've had, uh, a 52% increase in our new patient access, um, since starting this program and overwhelmingly we've had, um, just super positive feedback, um, about the, uh, about the program and management from our patients. Um, so in conclusion, we, um, we hope that today you're gonna come away with, um, the sense, uh, that we're Trying to convey that breastfeeding difficulties are truly, truly multifactorial, um, almost exclusively, um, and a multidisciplinary care model can improve outcomes, increase patient satisfaction, and decrease number of unnecessary procedures as well as increase access to care, um, and that really, um, for the future we need better data, um, as well as standardization of criteria and tools, um, to, to manage this. These are the numbers that you can contact to um uh send your patients um for uh concerns with breastfeeding or um uh tongue tied to, um, the, the first one and the main one that I will highlight, highlight is the pediatric access center. You can also go through our pediatric OHNS clinic here.
