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Episode 8 - Talking About Tongue Tie

Welcome to the Lactation Training Lab podcast, a show created to inspire, inform, and engage everyone who works with pregnant people and new parents. So glad you’re here! I’m Christine, an IBCLC and trained childbirth educator based in the U.S. After years of practicing clinical lactation care and providing professional lactation training to other healthcare providers, I created the LTL to serve as a resource for learning and connecting overall things lactation related. Whether you’re seasoned or studying, I hope this show will make you think and inspire you to act. Here we go!

Welcome back to the Lactation Training Lab Podcast! Today I wanted to spend some time thinking about tongue tie, sharing a little bit about what I’ve learned over the years. What I’d like this episode to feel like is a conversation that invites in especially those who have less knowledge, less understanding and less experience with this issue, but who work with pregnant and lactating people in any capacity. Because it's really important to always keep in mind that our overall ultimate goal is to support families and one of the hardest things for families is when they receive inconsistent messaging about the issues that come up for them and this is one of those areas where this really happens a lot.

This won’t be a very clinical episode. I’m not planning to teach here. I’m not in here to educate on how to identify or exactly what should be done or make recommendations about any of that today. In fact, I would say that if you are an advanced practitioner, if you are a really skilled IBCLC, if you are a person with a lot of expertise about tongue tie, you’re not going to hear any breaking news here. This isn’t something where you need to be listening to every single word and waiting.

This is really more of a conversation about how we should be thinking about this issue more globally - not so much how we should approach it, but how we should be thinking about it and how we can help to start shifting mindsets overall and on a larger basis. Because there’s so many people that impact, especially in the beginning, times when families have new babies, there are so many people who have contact with them for various different reasons and that does become a problem when some of those are people - and some of those lactation care providers even, some of those birth workers, some of those physicians and nurses and hospitals - there can be so many contacts that people have. What we see, what we find, is that there are many opinions about how important it is to know and talk about tongue tie, to be able to work through it.

Even so much as people saying things like “I don’t believe in that” or “isn’t that just a fad” or “that’s completely overdiagnosed” - all of those ways of thinking about it are really disrespectful to the people who do actually know about it and they completely disregard the body of evidence that exists around tongue tie and how it impacts lactation specifically.

We do want to work on this global understanding. I think that there are a few things to share here that might really help and I think that the place to begin for me, I first attended a workshop in 2012. In 2012 I’d been involved in lactation care for almost 12 years. I had been an IBCLC already at that time for 3 years and I knew about tongue tie, I knew about anterior tongue tie. I really didn’t understand anything beyond “this makes it difficult for babies to latch and causes pain.” So when I attended this workshop in October of 2012, the workshop wasn’t really even, I wasn’t going to this expecting to learn about how tongue tie impacted lactation. It was a feeding and swallowing disorders talk. I wasn’t in there waiting for this information about tongue tie, but it was an integral part of the presentation. It was an integral part of what those presenters actually do in their line of work.

They [the speakers] are speech language pathologists and OTs, and I remember sitting at a table where everyone else at the table besides my IBCLC colleague and I, everyone at the table was a speech language pathologist. And when they found out that we were IBCLCs, they really wanted to know what we knew about tongue tie and I sat there listening because I didn’t know a darn thing as it turned out. Fortunately my colleague really did and over the years I’ve learned so much from her and we’ve learned together in more trainings and we’ve learned through working in cases, and I think that’s kind of where this came from for me.

That first real true understanding that this impacts so much more than just how a baby can latch. Whether they can latch, what kind of pain or nipple damage it causes, and knowing that at that time, when I had already been an IBCLC and I had already been involved in this work for a long time, I was sort of flabbergasted at how I could have gotten that far without knowing it. I’m a little bit embarrassed, feeling a little bit vulnerable sharing that right now because how was I really helping people if I didn’t understand the full spectrum of problems that could be happening for them?

Thinking back on particularly difficult and challenging cases and dyads I had worked with over the years, I could pinpoint immediately as I learned this new information exactly where it would have been really helpful for me to know what I was learning and probably very helpful for those families and would have helped their situations turn out differently had they been in touch with somebody more skilled than I was. So moving past that steeled my resolve to truly understand more.

I think that where we’ve landed now 8 years later, there’s so much more knowledge and information, trainings, expectations for somebody who is practicing as an IBCLC to understand the potential impact of a tongue tie on lactation. It’s really part of what we do in a much more respected and expected way at this time, so I love that, of course. I’m really pleased about that because at this time the body of evidence supporting this information has obviously grown as well.

This isn’t the place to really go into the body of evidence, but we know that the body of evidence exists that helps to support the fact that we are doing this work, providing skilled expertise as skilled IBCLCs that supports families to move through these problems or if they choose not to revise tongue ties to move around these problems, to be able to navigate the potential things if their babies have unrevised tongue ties. Those are two completely tied together skill sets that we have to have because in the end it’s never our decision, it’s the family’s decision whether revision is possible.

I think that’s another place where it really comes into play that the thinking about how it impacts families when they receive these inconsistent messages from others and they hear phrases/statements like “tongue tie isn’t real” etc, when they hear those statements, it makes those decisions harder for them. It becomes really difficult for them to make the right decision for their family because they don’t sense a confidence that comes from the larger group of providers or the people around them. That inconsistent messaging keeps rearing its ugly head anywhere we go in lactation care.

So again as I mentioned at the beginning, I really invite anybody who has skepticism or maybe they feel like they don’t have enough knowledge to even be discussing this with families - I encourage you to seek out information. There’s so much more out there at this time, there are so many people who know so much and I’m not going to say that there’s complete agreement on every aspect of how this care works. There are plenty of amazing and completely appropriate debates that go in many directions surrounding every single aspect of lactation care and care of the baby who is tongue tied. There are lots of ways people have become experts in different points on that journey and that’s something that is really important to know.

It is a journey for families to uncover the possibility that their baby has this particular issue, to go through a discernment period of deciding whether this is a time where they’re planning on having this revised, and then if they do, moving through that period of post-revision where there’s a need for a lot of extra tasks/activities/work so that the baby can have rehabilitation of many of their motor and reflex pathways. There’s a time of recovering skills and understanding about how lactation works that may have been missed or set aside during the time that they are trying to make it through.

Then on the other side of the tracks, if they’ve decided not to have the revision, learning the supportive skills that are going to help them move around and compensate for the issue that their baby has of function. So there’s just this really long time frame and spectrum for families where tongue ties impact lactation. And we know every time we attend a course or class or training on tongue tie, one of the very first things that’s usually discussed is the potential impacts and risks to lactation. One of the biggest risks is weaning. We’re talking early weaning, early unintended weaning, early complete or partial weaning. There’s so many ways that this can go for families, so if you think about it that way you really have to focus on the fact that if those are the potential outcomes from a baby having a tongue tie and trying to go through the process of lactation, if those are the potential outcomes, all those different types of weaning that are not within the parent’s choice, how is it fair to hold information back from them?

How is it fair to say “I don’t believe in that so you should not be thinking about that?” or “that’s just a fad/overdiagnosed.” That’s not fair. This isn’t a situation where we can just set that information aside. We really have to allow families to play with this information themselves, to discuss it among themselves, to come to decisions based on information instead of opinions.

This isn’t really about what anyone believes. It’s about information that we know from all of the ways we know anything about biology and the human body - research, observation, case studies, from all of the things that we do. I think that the other part of where that comes in too is when you’re getting information, if you’re in this audience, you’re one of those people who has contact with pregnant or lactating people throughout any point on the spectrum, you have this contact with people so you have the ability to impact how they think about these things. If it’s brought up you have the ability to say what might be going on or what you’ve been told might be going on so it’s really key for you to keep in mind that when you get information that you are getting information and pulling together your own personal set of knowledge and skill set from people who actually understand this because they work with families along the entire spectrum of lactation.

You can’t really take information from someone who only sees babies in the hospital and say that is a good look at how this can possibly impact lactation. You can’t really take information from a physician who doesn’t spend time with families working on lactation issues and say that is as valid as an IBCLC who works in your community in private practice and sees families on an ongoing basis and all points along the lactation spectrum. You really have to give weight to those who are doing the work with families throughout the spectrum.

We can’t take the same opinion from somebody who doesn’t do the work and put it on the same level as someone who does the work and is with the families and is watching the symptoms, and changes that occur over time, seeing how things change/improve/get worse with revisions or procedures or different types of care. You really need to know that your information is coming from people who are actually engaged in the work, whose hands are actually dirty.

If someone is not involved in it, how would they know? If they only know from reading or hearing, it’s almost like thinking about it as hearsay. If they’re not engaged in it, it’s hearsay. It’s really important that you as a learner are getting that information from the right sources.

In the end as we continue to think about why this is an issue or why this is such an important thing to know about, I always go back to this. I say this a lot when I teach live in person, I find myself saying this a lot after we discuss anything that’s complicated, any kind of complex situation that might come up. I find myself reminding everybody that even though that could happen, even though these really difficult challenges could come up, even though this seems complicated, the thing about breastfeeding is that it’s a robust process. It’s designed to work. It’s an evolutionary mechanism, a survival mechanism for mammals which is designed to work. And it has design features that give it some flexibility so that there’s room, it’s a robust process, it has room for flexibility, it has room for differences in how people are and how parents and babies match up and all the different ways that things can play out, and that works whenever we have healthy people with normal function.

The times when things go astray and get complicated and require expertise and specialties that go above and beyond, well, that’s when we have people who have issues with their health or function. And that’s what tongue tie is. It’s an issue of function. If we think about it that way, everything should be working fine. If there isn’t a tongue tie, if there isn’t a medical issue that causes a milk supply problem, everything should be working fine in lactation until we identify that it’s not. If we see that there is a problem, that’s when we go back and look for what might be the root cause of that problem, but we don’t look for problems. We look for signs that there could be a problem and once we see those signs, that’s when we trace it back. We don’t assume that everyone will have low milk production, a tongue tie, difficulty latching, but if those things occur, we want to have the skill set and knowledge to solve those problems.

This is like any other problem that could potentially affect lactation. So that’s the way I like to look at it. Again, I encourage you to seek information, conversation, ways of learning, opening your mind, perception, and acceptance to the concept that tongue tie is a significant issue that does impact dyads when they’re in the process of lactation. We’re not even talking about anything beyond that at this point. That’s a topic for another podcast, but for what we do here, for lactation training, there’s just no getting around it. We have to know this information and have it and this is not a matter of “well, IBCLCs have to know it but if I’m a lactation counselor, I don’t really need the information because I can't do anything about it.”

I don’t believe that, I don’t believe that you hold back information because there’s an expert or clinical specialist on something. Wouldn’t you want to know how it works so you can support people even better even before you pursue any higher certification than what you have at this point, or if you're even going to? Everyone needs to know this information, everyone needs to understand the potential impacts of tongue tie on lactation so that everyone can support the families better especially when they’re trying to make these hard decisions.

Thanks for sharing this with me today. I’ve really enjoyed the opportunity to get some of these thoughts out. I expect there might be some good feedback with this, some response, I would love to hear what you’re thinking and I look forward to the next opportunity to share with you!


Listen to Episode 8 here!

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