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 the beginning of the site here. All right. Um So I'm Grace Bonne. I'm one of the um the assistant professors in the division of Pediatric Otolaryngology here at U CS F 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 want to 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 anlo glossa. 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 ex 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 breast feeding is back on the rise, there's um at the same time, this kind of over diagnosis of tongue tie or ankle glossa um A as one of the main ideologies of that. And then there's um subsequently a large number of unnecessary for anatomies that are being performed. So those are things that we are gonna 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 U CS F 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 the level of care that we're private providing to patients who are being referred for Ank gloss. Um We were seeing a huge increase in the 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 to. 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 forat me with us. Um And then we have um we sort of tapped into this unique resource that we have in Ellison and another um of our double certified speech pathologists and lactation counselors who have 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 and care. Um And then in, with respect to tongue tie, in particular, it actually reduces the number of unnecessary forat is performed. Um This study out of New Zealand um is uh part of that kind of evidence base um about multidisciplinary care for tongue tie. Um They actually looked at uh what happened when um they developed this program uh in this um, area called Canterbury. Um and then compare that to um the rest of New Zealand. And they found that after implementation of their program, um they saw a sharp decline in the percentage of patients who were, um getting ph anatomies. Uh And yet they saw that the rates of breastfeeding actually um increased slightly, um despite the decrease in the number of anatomies. Whereas in New Zealand more broadly, it, uh 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 based on their age if they were generally under the age of six 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 two 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 um 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 ankle glossa, um the first thing our schedules are gonna do is actually obtain preauthorizations 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 their breastfeeding um with uh our speech language pathologists and that's often done within a few days, um because they have dedicated spots for uh for patients who are being um 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 our 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 potential and internal lactation issues that are causing the breastfeeding difficulties, then we um we'll refer them on to doctor 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 lingo for, 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 ankle glossy 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 a an over 800% increase in the um diagnosis of anglo gloss over the past couple of decades. Um Now, you might think how does that make sense? Is anglo glas all of a sudden a new problem that's 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 t and glossy 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 ankle alasia. 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 wanna first and foremost say that a visible lingual frenulum, so that band of tissue that's under the tongue um is complete. The 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 um a single band of tissue that creates this frenulum. Um It's this entire layer over here on the right sided um diagram this green layer that's under the red layer that's like um represents the mucosa of the floor of the mouth. It's this green layer, that's a fact band that connects to um this genioglossus muscle here and other structures um in the floor of the mouth um 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, um the ventral portion of the tongue and that creates the appearance of a band. Um there's variable thickness and composition to uh this facial layer in people. And we think that that contributes to some degree on whether people will 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 uh to the tongue. Um and um is just a normal anatomical structure and doesn't have any functional implication, other oral ties such as um for example, labial or upper lip ties and then buckle or cheek ties are also commonly talked about and diagnosed these days. Um But there's actually no evidence to support that these are true ties uh that affect um you know, anything ranging from dentition to feeding in, in Children. Um And then there's a lot of things that are associated or attributed to tongue tie. Um Some of them are evidence based, the majority are not. So, uh the things that have been shown in the um in research to be associated with tongue ties are maternal nipple and breast pain, maternal nipple and breast irritation, ineffective latch and failure to thrive in severe cases. The um the column on the right are all things that uh are often attributed to tongue ties such as poor milk supply, breast engorgement, um breast or bottle refusal difficulty when transitioning the 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 ideology. 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 ideologies 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 Doctor 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 ideologies of like nipple pain. Um and then uh and then a whole host of other disorders that again, Doctor Yang will talk about in greater detail later on. Um on the infant side of things which um Alison will be discussing uh in some detail. Um It, 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 reflex and then if they have any sort of like airway abnormality such as nasal obstruction from a coal atresia, or if they have like severe congestion related to turbine or adenoid hypertrophy, if they have any um sort of uh upper airway pathology, such as Laryngo, Malaysia 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 Alison now to um discuss a little bit further about the underlying physiology of breastfeeding in grace. And um so in the past, there have been two traditional theories of how the milk is extracted from the breast. One is is sucking, emptying the breast by sucking using negative intra oral pressure. The other one is mouthing where primarily emptying the breast by compression. And so lot 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 palate as a form of reference because the hard palette doesn't move and it helped 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 tun 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 or asymmetrical latch that we can trial in the evaluation? So overall, there's a lack of accepted definition and classification of angle glossa 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 five point Lyr scale that ranges from 14 to 70 the higher the score, the higher the level of self efficacy. We also use Jenny Ingram's team out of the University of Bristol. They devised an effective measure called the tabby or the tongue tie and 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 zero to a maximum of eight. Score of eight indicates normal tongue function. Six or seven is considered as borderline and five 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 zero to a maximum of eight. 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 Malaco 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 reduce 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 that happen ne negative outcome in that. Yeah, and decreed these levels of self Alison. 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? Oh, ok. 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 is a concern for a true tongue tie um that is uh abnormal and 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 faty. Um So the faty 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 six 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 cadre 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 U CS F, 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 tongue gu 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 the simple release that I just described, which is called the Freno toy. Um For uh for general understanding, there's also um something called the frenulectomy, which is a full excision of um kind of triangular area under the tongue. Um And then there's also um techniques that rearrange tissue and suture um in the uh in the floor of mouth called frenula plasty. But again, with these various complexities of um 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 ph annoy or um any of those techniques described in uh babies with ankle o glossa, 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 Cocker review that looked at this topic, um and found that really the only um variable that was uh associated with um performing a Ph Forot toy that um uh improved was a short term reduction in maternal nipple pain. So, there was no improvements in things like latch. There was no improvement in things like um the amount transfer, there was no improvement in breastfeeding rates, et cetera. Um There are complications even though this procedure is uh generally quite safe and um minor, but there are comp um complications that can arise. And so we have to weigh the risk 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 worsen 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, retro nathia. 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, a, 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 T and an glossa. Um There is no evidence that really supports um the efficacy of like oral motor thera craniosacral therapy, myofascial release, other chiropractic interventions that are often um out of pocket. Um And this diagram here shows that there is 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 socio-economic status and um ability to pay that goes into the um to, you know, the the diagnosis of tongue tie there. In addition to insurance coverage, a lot of differences in the cost of the payment um or cost of the patient actually um for services related to the diagnosis of tongue tie, huge differences in management recommendations and follow up needs um 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 U CS F. Um We have uh have seen a market 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 tai. 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 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 decreased number of unnecessary procedures as well as increased 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 tie 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.
