Episode 42: There’s No Such Thing As A Mild Tongue Tie

Hi and welcome to episode 42 of the Untethered podcast. Today it's your host, Hallie, and we're here to talk about how there's no such thing as just a mild tongue tie. That should be dismissed. I know I'm gonna, you know, get some people who are going, hmm, but there are classification systems out there and yes, there are, and I'm not saying that those systems are incorrect. That's not what the message is today. What I want to highlight is that I get a lot of mamas, specifically who call, who are having a lot of breastfeeding pain and troubles or a child who couldn't breastfeed well and now they won't even bottle feed well. And maybe they've been hospitalized for dehydration, maybe they've been on a feeding tube, whether it was short term NG tube or they've been put on a G tube, you know, through their belly gastro tube. You know, there's, there's various different kinds. And that's not what the whole talk is about today. But the point is that I'm getting these mamas who are calling and they're telling me that they've been diagnosed sometimes by providers who say, well, yes, your child does have a tongue tie, but it's mild, like, as if it can't possibly be impacting anything. And so this drives me up a wall because I assess these babies when they end up in my office, when they're kind of at the end of the road in terms of like, hey, if we don't figure something out soon and the baby starts to lose too much weight, you know, we're headed towards a feeding tube. And that's what every parent calls me in fear of. That is what they want to avoid. Not only do they want to enjoy their baby, not have their baby screaming, crying, uncomfortable around the clock because many of them are, they're so gassy, but they want to avoid a feeding tube because that's not the, you know, that's not the ideal way that they want to feed their child. You know, forget the fact that a lot of these moms have no longer been able to breastfeed. You know, they've had to give that up for just so many different reasons, whether it be they just couldn't manage the triple feeding schedule, maybe they've had several rounds of mastitis and medications and, you know, or they're on other, you know, meds that have kind of killed their supply as a result of some things going on or baby just won't go anywhere near them. And so they were pumping around the clock. And just, you know, emotionally for them, it just, it was too much. And, you know, we're really failing our moms. And I'm getting chills saying this because I struggled with my first child. And I really think it, you know, I didn't realize it then, but I realize it now that it impacted our relationship because it was uncomfortable to breastfeed her and I was so stubborn. And thankfully she was able to breastfeed well enough, even though she fed every 45 minutes. And she fed on me all day long. And it's like as soon as we stopped the feeding, I felt like we were starting our next feeding. I was still able to breastfeed her. And I'm very grateful and thankful for that. But I was told she didn't have a tongue tie. I was told she didn't have lip tie. And you guys know, since you've been following me for a while, that's not true. She absolutely had both and they were impacting function and it impacted things greater than just her feeding. You know, her oral facial development was impacted. She has a lisp now with a tongue forward posture at rest even though her mouth is closed most of the time. And so there are later things that we have to consider. And while I don't recommend and I don't get to make the decision as to whether or not a child has a procedure, that is out of my scope. But when parents ask my opinion, you know, if there are no symptoms, I'm not typically referring them to a release provider because function is what drives everything. And that's where I think we're failing our mamas. They're coming to us because they know something is wrong, something is off with their baby. Some of them are first time moms, some of them are second time moms who didn't have this problem. The first go around and they know something is off and they're still being pushed away over and over and over again by dozens of different types of providers. You guys, this is driving me up a wal. So I wanted to get on here and talk to you guys because number one, I'm a pediatric feeding therapist. And you know, we do have an upcoming. Actually this week we've got an upcoming five day challenge to screen your first pediatric case feeding case. And so if you're a speech pathologist or an occupational therapist or someone who is licensed to do feeding therapy and you're interested, we'll link that on our page so you can join. But if you go to feedthepedes.com training. You can register for that. You'll want to get in our Facebook group by Wednesday. But anyways, I digress. This is why I'm so passionate about educating people about myofunctional therapy. Tethered oral tissues, feeding airway. You guys, I've been there as a mom, I've been there as a patient myself. I've now gone through this two different ways with my baby who was born and released at day five and my other baby who was born and was not released till 24 months. And we're dealing with the ramifications of that. So I went ahead and googled mild tongue tie because I was curious, like, what is coming up on the on Google Doc? You know, Dr. Google, I just want to say Google Doc. That sounds like what I use to share documents. Dr. Google is what I meant. And you know, I wanted to see like, what are moms and dads and even other providers, what are they seeing when they they Google mild tongue tie. And I was really surprised because websites like breastfeedingusa.com say tongue and lip ties can affect a baby's ability to breastfeed. Babies who are tongue tied are often not able to drink well from a bottle or take a pacifier. Older tongue tied babies may have difficulty in swallowing solid food. Their tongues may not be mobile enough to move the food to the back of their mouth. Okay, and that's all accurate, but it was interesting to me that I googled mild tongue tie and that came up. So all right, now stick with me here. Then I went to the next thing from Healthline and this one said, and these are like the first things that pop up. I don't know if people are advertising or if it's just such a heavily visited site. And how Google decides to put these like in bigger text at the top of the page. So I'm just sharing with you what it says. And Healthline says by gently lifting the tongue up with a flashlight while you hold your baby's head still, you may, and I don't know what flashlight they're recommending that you hold your baby's raise your baby's tongue up with. Unless they're talking about the throat scope, in which case, okay, but most parents don't have that. While you hold your baby's head still, you may be able to spot a thin band of red tissue that holds a tongue close to the bottom of your baby's mouth. Another possible symptom is difficulty breastfeeding as indicated by trouble latching onto the breast. Okay. Not only is that, like, a gross understatement of the functional impairment that a tongue tie can cause, but I just don't think this is a very good definition of tongue tie in general, because I know that when I'm assessing a tongue tie, especially if there's tight, tethered oral tissues under the tongue, when you lift that tongue up, if you're doing the lift properly, you actually see a band of white tissue, and that's typically an indicator. Now, could it be red? Sure. But usually, in my opinion, that's a little bit more stretchy, and there isn't always a impairment there, or functional impairment, I should say. So I just. I thought that that was interesting because it's just nothing there to me says mild tongue tie or talks about, you know, I think breastfeeding. USA did do a decent job of describing, like, the impact of tongue and lip ties, but why mild lip tie pulled that up? I don't know. So I just think the whole point of this is that there's so much information out there, and there's, you know, we, as professionals in the medical field, our job is to do no harm, right? But when we're putting out information like this, it can be harmful because it's confusing, it's not consistent. And so, you know, I know my colleague, the James Ryan, for example, there's other colleagues out there as well who have been guests on the podcast, Scott Siegel and some others. They're doing a lot of research in this space so that they can, you know, James Ryan tried to not try. He did, you know, create a definition of tongue tie for babies 0 to 6 months of age, and how to determine if there's functional impairment in terms. In the way that they. They diagnose that tie. You know, and then there's other research being done with Dr. Scott Siegel and many others as well, with infants specifically. But I share all this because there's still a lack of info out there. And it's. And the info that is out there, it's hard for parents to find it. So we as a community really need do better by our parents. And I say this because these parents who end up in my office, and now that I've got a group of feed the PEDs, OTs and SLPs who are doing pediatric feeding therapy, and some deal with tethered oral tissues and infants, what they're sharing with me is that, you know, they're pretty confident in what they're seeing. In some places, speech pathologists or OTs can't diagnose tongue ties. And so they refer out to get the diagnosis. So they're either sending that mama and baby, you know, I should say the dad too. It's not just the mama and baby, but I say that often because of the breastfeeding relationship. They send these families to a release provider who could be an ent, a dentist, an oral surgeon. I recently heard some pediatricians are doing it, which is questionable, but okay anyways. Or even the pediatrician who's not a release provider, and they just dismiss the ties, or they say, oh, it's just a mild tongue tie. So that's, you know. And again, this episode is not to poo poo anybody else out there who is in the space or who maybe isn't in the space and needs more education. What I always ask that family when they come to me because I'm going to assess and look for these tight tissues, is how did that provider assess for function? How did they come to the determination that this is just a mild tongue tie and we don't need to do a frenectomy, we don't need to treat it? Because that can be very telling. And I ask that because 99% of the time these providers are not doing a functional assessment. They're doing a quick look see under the tongue, if even, that they might be lifting the tongue up. But I've heard even local to me, like an ent, say, oh, I can lift the tongue up so it's mobile enough. You can lift the tongue up, but the baby can't. Baby also can't lateralize the tongue, despite the fact there's reflexes in place that we should be able to stimulate to help them lateralize their tongue, and they still can't do it. But you don't feel this is an issue. Right. So, you know, I'm just, I'm very frustrated as a provider because we have these reflexes. And oftentimes when I do these assessments, some of the things that I look for, for example, are, is that transverse tongue reflex present? Right. Can the baby move their tongue to the side? And that should be able to be stimulated as a reflex with like my finger. So I'll put a gloved finger in a baby's mouth and I'll try to move the finger along the baby's gum line and see does the tongue follow? Because it should. When it doesn't, I start to go. And I don't automatically think tongue tie. I want to make sure that I don't have any concerns about neurological issues. As well. Right. There could be other things going on, but my brain starts to go, okay, we need to look at more. Right. So then I will go into the baby's palate, and I might put my finger up into the palate and feel. Does it feel high voltage? Does it feel narrow? Is there a bubble palate? I'll flip my finger over and I'll see if baby can suck on my finger. Because there's also a suckling reflex. And these are all reflexes that integrate at a certain point. So, for example, like the transverse tongue reflex, that one actually integrates around 9 to 24 months of age. And when I say integrate, it just. It basically disappears at that age is what we mean. And that motion then becomes something that they volitionally have to do. It's no longer automatic. A lot of these babies also don't. There's. There's a swallow reflex. I was trying to come up with it in my brain. There's a swallow reflex, and that one integrates around four months of age. So. So guess what age I often get babies in my office somewhere between four to six months of age. Why is that? Because they've been told. Either they've been told there's no tongue tie, even though there was concern, or nobody even thought to look for a tongue tie, despite the fact baby was having all these symptoms and issues. Maybe they're on reflux nets and all other kinds of fun. Other things have been tried, but mom and baby are still not having success. That swallow reflex, as I said, integrates at 4 months of age. That is why. So once that swallow is no longer automatic and it becomes volitional and baby gets to decide if we're gonna swallow the milk or not, this is when I sometimes see these babies whose tongues just lay flat and they don't lateralize and they don't suck. All they do is they kind of. The jaw moves in like a chomping, munching pattern. And that's where you get mamas who say, oh, the breast, you know, or the baby chomps on my breast or bites my nipple or can't get, you know, can't get it deep enough, so it's very shallow. And then they bite and they clamp down, and it really hurts. This is because they're trying to use their jaw to support what their tongue can't do. And so in a lot of these babies, I also sometimes see milk spill out the corners of their lips because they're not. They're either not swallowing it, so they're Kind of overflowing in their mouth and it's coming out because there's nowhere else for it to go, or. Or they also have lip. There's issues with, you know, the obicularis oris, your lip muscles here, that kind of help you round your lips or help the baby bring the lips, you know, more circular shape to, like, help with the suck, you know, between the tongue and the lips and everything. We should be sucking that milk in and drawing it back and then swallowing it. But a lot of these babies are not doing that. So this is where we start to go. Nobody's actually assessed this baby. Baby has all these symptoms. And if they've been so lucky to get to this point because mom either has oversupply or just a good supply, or, you know, baby's just kind of. Or a lot of moms are actually surviving with nighttime dream feeds or dream feeds, I guess, around the clock. Because when you have a little baby, they sleep a lot more than just at nighttime. And half the time they don't sleep at nighttime. But that's neither here nor there. These babies and these mamas who have kind of just been getting by, can no longer get by when baby starts to refuse to swallow because they don't know how or because they can't or because it's like they're being flooded with milk. And then for some of these babies, the milk ends up going up their nose. And so then during the feed or post feed, we start to hear that, like, you know, noisy breathing. That seems to be their post feed. So when parents or mamas tell me that there's noisy breathing after a feed, for me, that's very concerning. And I want to know why. Why is milk going up towards the nose, towards the nasal cavity? We don't want milk up there. It's supposed to be going back and down the back of the throat right into the esophagus. We should be swallowing that milk. But these babies are not always doing that. And then obviously in more severe cases, we have to consider issues with aspiration. But thankfully I don't get too many babies who are at that point. It's usually babies who are swallowing too much air because they don't have a good lip seal, they don't have good or any tongue control, they're using their jaws to eat. And so this is also why some babies have an easier time drinking from a bottle, right? Because if you can fill that bottle nipple up with milk and just chomp, chomp, chomp, compress, compress, compress, instead of suck to draw it out, they're at least able to get the milk out easier than if they had to draw it and pull it out of mom's breast. Again. There are some mamas who have really great supplies and they're like garden hoses and baby's just lucky because mom does all the work. But that's not always the case and that's actually not as super common as one would hope in these scenarios for mama and baby. So we have to really consider so, so, so many different factors and it drives me crazy, like seriously to no end when providers are so dismissive. So if you're someone who's experienced this, please share this episode with your pediatrician, with any release providers who have turned you away, with any provider who basically didn't believe you when you were having issues with your child. Because people need to know. And that's the whole point behind this podcast and my recordings and sharing my experience and my story and other people's stories, you know, other mama stories as well as other provider stories and provider experiences and research. Because without the education out there, there's nothing will change. So I urge you to share this, especially with other moms who might be struggling so that they know there are some hope and they can take this and they can use it and they can share it with the provider who might be turning them away and say, hey, look, I have all these symptoms now. Another thing I'll mention, which I alluded to before, was that these babies and mamas end up in my office between four to months and a lot, you know, I do get pushback from dad sometimes who's like, well why have they survived for four months without anybody, you know, releasing the tongue or lip and why is it all sudden a problem now? And I look them dead set in the eye and I will let them know because your baby had a swallow reflex that integrated and there's other reflexes that are changing and now baby has to swallow volitionally as I mentioned before. So now imagine a baby who doesn't want to swallow their milk and now we're going to stick a spoon with some puree or some food in their face at six months of age. What are they going to do with it? They're going to spit it out. Okay, well some babies do that when they're starting to eat and that's okay, but we want baby to be swallowing more than they're spitting out. Right? And so that's another thing that drives me a little bit batty. And that's a title for another episode. Food before one is not just for fun. Food before one is for development of orofacial skill. Well, I should say oral motor skills, right, for feeding and other things. But, you know, your orofacial development is dependent on the ability to chew and eat, right? Your food, right? Swallow your food. And so food before one is not just for fun. We actually need to introduce a lot of foods to avoid later allergies before 12 months of age. That's not for fun. That's to avoid some serious health issues. We also need to, we want to avoid any sensory issues from developing, from waiting too long to introduce these foods. And I've had kiddos who had medical issues where they could not physically eat before 12 months of age. Some of them couldn't eat before 24 months of age because of their medical complications and diagnoses and just other things they were dealing with. And it's really challenging to get them to eat after that point. They absolutely can learn, but they missed so many critical skills in their developmental course that, you know, learning how to chew and swallow and feed. And while these reflexes were integrating and it now became a volitional thing, Sensory motor experiences are not something that can be replaced if they are, you know, missed necessarily. We can teach things later, but it is crucial to be doing these things. And so if you have a baby who you're concerned about, who has a mild, moderate or severe lip tie or tongue tie, you know, I encourage you to get rid of the mild, moderate, severe labels. We want to look at functional impairment. So if baby and mama, baby or mama are functionally impaired, we need to look at why, what is going on. And sometimes I've had moms even tell me, well, I'm fine, you know, or they're not really fine. And we start talking, they go, oh, I didn't realize all of those symptoms I was experiencing was due to how my baby. My baby couldn't breastfeed properly, or they couldn't latch on or mean or, you know, their sex, swallow, breathe was off or whatever. Like, there's so many different symptoms that a lot of moms don't realize was because of baby not being able to feed, including mastitis. I have some mamas who have had mastitis more than once. They've been on of heavy medications to clear up that infection in their breasts. And they had no idea. Nobody told them this is because your baby can't pull the milk out of your breast. So here they are thinking that it's their fault that they had this issue. This mastitis diagnosis and they had to be medicated and, you know, couldn't feed their baby while on some of these medications because for some they're resistant to certain meds and they have to go in and more heavy duty type meds. And I've got these mamas who are just walking around with serious guilt, serious guilt, feeling like major failures because they can't kill their babies. So I ask you, what are you doing to make sure you're educated and you're educating pediatric professionals in your community to help them realize that we are failing our mamas and our babies big time. These moms need to know what symptoms to look for. They need to know this is not their fault and they need to be supported and not turned away and brushed off for being a overreactive new mother or mother of a second child who is just forgetting how to parent for the second time. You know, it's the second time and you're in that, you know, fuzzy stage of hormones and blah, blah, blah, blah. No mamas know when something is off. So if you're a mom and you're listening to this and you think something is off, I want you to reach out. I'm happy to support you. You can contact me. I will help connect you with people in your community. And I know that my colleagues would do the same because we want to help you. The other thing I'll say is that sometimes mamas have a lot of symptoms themselves, but they feel like, oh, well, baby's feeding and baby's gaining weight, so it's fine, I'll just deal with it. That was me. Don't do that. It's not fair to you either. And likely, if you're having symptoms, baby's also having symptoms that you're not realizing are likely related to that mild tongue tie that you were brushed off about or that nobody has even mentioned or looked for. So all of this to say, I want you guys to educate each other, educate the community, educate the professionals in your area, as I mentioned. And mama, if you're struggling, reach out. Clientcareeedthepedes.com Send us an email, let them know you heard this podcast episode episode number 42 with Hallie talking about a mild tongue tie. And we will get you the support that you need in your community. I can't diagnose over pictures or videos. I'm not licensed in every state. I'm only licensed in Maryland and D.C. but I can find you somebody who is licensed in your area who is knowledgeable about tethered oral tissues and who can help you figure out what professionals to see to to get you and your baby the help that you need. I hope this is a helpful episode. It's something that has been weighing heavy on my heart, something I really wanted to share for a while now, finally getting around to recording it. And again if you're a pediatric OT or SLP or feeding specialist or therapist or somebody that has this in your scope of practice under your licensure I encourage you to join us because tethered oral tissues or is my jam it's my love language. I encourage you to join us in the upcoming training where you can watch me screen my 2 year old and screen my 4 year old with the free pediatric feeding screener that we put out. And both of these kiddos were tongue tied and liptide so come check it out. Feedthepeeds.com training sign up and join us in the Facebook group. I will see you guys there. This is Hallie signing off.