7: Response to the NY Times Tongue Tie Article

Hey Mama, today we have a hot topic, and the topic is tongue tie. More Specifically, a response to the New York Times tongue tie article called “Inside the Booming Business of Cutting Baby's Tongues”.  I want to thank Katie Thomas, Sarah Cliff, and Jessica Silver Greenberg for writing this article.  Not because I am all in on every single opinion of everything said but because I think it's spurring such a good Conversation and an important one!

I've been sent this article from multiple friends and multiple moms and interestingly, many people have a different opinion. Some feel that lactation consultants and dentists are thrown under the bus as a big group while others feel like, finally- this is being talked about because what an issue we've had.

It always goes back to their personal experience and their personal knowledge base in the matter, but I thought it would be fun to have the discussion today. So bring your opinions, bring your knowledge base, and your own experiences, but also please bring a little bit of an open mind as we talk about an area that really isn't black and white.

 So let's jump right in. Do I believe in tongue ties? Yes. I believe that children are born with various midline issues like tongue tie, cleft palate, and frankly many others. If someone can be born with additional or less tissue than expected, why wouldn't it be possible anywhere in the body?  That being said, I believe there's a wide range of normal as well.

Many adults walk around with varying degrees of oral tissue range with no functional issues. Or, with unknown compensations that are working just fine. The question everyone has though, when they ask me about tongue ties, is when to “cut” and when not to “cut”. And there are a few standardized tests available to try to help to turn this gray subjective issue into a black and white one and help guide these decisions. But at the end of the day, I think everything ends up impacted or at least touched by subjectivity and our own personal experiences.

In the New York Times article, the authors write about how mothers are being sold this tongue tie release and lip tie release as a cure all. And they're really being offered these fear based factors like: ‘tongue ties are going to cause speech impediments later,’ and ‘they're the reason for the breathing issues’, and of course ‘this is why you're having breast and nipple pain because there's a tongue tie’, etc., etc.

I think that when we get into fear based decisions, that is really, really scary, and I know for a fact that this is being told to parents because no practitioner wants to leave something on the table and five years later a mom to come back and say like, “My kid has a speech impediment, why didn't you tell me to clip their tongue?”.

I get asked many times, do we need to clip it for speech later? And the truth of the matter is, I do not know.  Of course you need tongue mobility to make certain sounds in your mouth, but whether or not your baby's tongue mobility is going to impact speech later, whether they're going to be able to work around it for that movement on their own, or even stretch for more range through functional movement: I really can't tell you. I don't have a crystal ball. Although, I really wish I did, I can't say for certain.  Surely, there are a handful of kids out there who have such reduced range by their tissue because of tissue abnormality that, yes, they really would need a little bit of help; but a lot of these questions are coming from babies who are kind of on the line.

Do they have tongue tie? Don't they have tongue tie? They have a few symptoms, but not all the symptoms. What's going to happen with their speech? The truth is, mom, I don't know and I don't think anybody should be making that promise one way or another to you. 

The article also calls tongue tie releases a ‘niche money making industry’ and just like other medical equipment sales, the companies that are making, training, and selling oral tether lasers to doctors- are a company. They are marketing to doctors. The doctors are being marketed to just like we are as parents. And I think that's really important to understand.  You can believe anything if you have the right perspective. A company might believe they're doing good. They might believe that they are helping a whole slew of kids eat better and why not make money in the process.

So when it comes to this, I do think we need to be aware, just like anything else, that marketing may have touched some part of this information chain.  The authors also point out that some lactation consultants are paid for their referrals, although the lactation consultants that I've worked with personally do not make any money for referring to dentists or ENTs for tongue tie evaluation and releases, and the ones that I have worked with personally do not take this referral lightly.

Many of the parents that they are working with are apprehensive to get this surgery, and oftentimes they're looking for any type of workaround before this.  Chiropractors and speech-language pathologists are also a little bit thrown under the bus in this article, in that many are touted to claim that their services are necessary for successful recoveries.

To me, this is also a gray area. There are times where I think that these professionals are highly, highly useful and highly advantageous in regards to tongue tie releases. And also to prevent unnecessary releases from being performed. But I'm not personally offended, I think that you should be skeptical of someone selling you something.

I think you should be skeptical of anyone that tells you, this is this many visits before this, and that many visits after that, every time, and this is exactly the way it goes. We are people. We do not fit on a paper protocol most of the time. So while I hope that you don't lump all lactation consultants, chiropractors, speech-language pathologists, ENTs, and dentists into this industry money grabbing persona when it comes to tongue ties, I do think that you should be skeptical and listen to your gut.

Another thing that the article includes, but only indirectly, is that feeding issues can be caused by things other than tongue tie. And the article does state this, but through storytelling of children who had negative and highly difficult feeding roads post-surgery, it doesn't call out that we still don't know what the original barrier to feeding was.

So, how much was post-surgery trauma and how much was the continuation of original issues never resolved is unknown in these stories. And that's a really important thing to consider, I think.  Now, no surgery is without risk. Period. And the tongue base and attachments have several layers of mucosa involved and that's not including what you find if you go too deep.

So cutting tissue on any person should really just not be taken lightly.  Even though I personally really like to believe that an overwhelming majority of lactation consultants, doctors, and rehab specialists really do have your child's interest at heart. At the end of the day, it's what you don't know that can hurt a patient, and each professional despite their field, has a very wide range of experience and training. For example, literally anyone can call themselves a lactation consultant in most states in the U. S. Because other than in a handful of places, it's not a licensed field.  International Board Certified Lactation Consultants receive the most education and clinical hours in order to receive their credential, but what type of baby and mother have they seen the most? And this doesn't just apply to lactation consultants. Speech-language pathologists are another great example. Even though we might work with pediatric feeding, do we also have experience with infant feeding? And still, some may not have experience with a range of medically involved infants. They may not be confident beyond a paper protocol when it comes to an infant's sensory and motor skills.

And what if someone has never worked with other disciplines? Maybe they don't have the experience to see things from multiple perspectives. Obviously, we all start somewhere. And there are really great, young, new clinicians out there. And surely some touting their long experience who are really stuck in their own belief system. I'm merely pointing out that there's a lot of variability to professionals out there and that parents should really vet who they're working with.  Parents should also really consider if it gets to the point where they're considering a tongue release or lip release, if they're prepared or able to follow the post procedure wound care necessary to maintain a range achieved by the release.

The article does touch on this and how the lactation consultant was having her hands in the baby's mouth to re-stretch the wound. If you're orally adverse and sensitive, that can be pretty traumatic. At the same time, who wants to get cut just for the tissue to reattach (as it's designed to do) and then feel like they may have just ended up in the same place as they were before except with a scar and a negative experience?

So, it's really something to consider, from all of the angles, if you're considering this as an option.  I personally have seen patients post release with no change in oral function or feeding pattern. I've even seen some babies who have gotten releases done more than once. For these and other reasons, I would really like to encourage doctors performing oral tissue releases to consult with other professionals and see if at all possible the issue can be resolved in other ways and just to really be sure that it needs surgical intervention before going down that route.

When a baby is referred to me with a possible tongue tie, I'm looking at the whole baby. I want to know if they have tight muscles or restrictions in their tissues that might be pulling down the chain and impacting oral range of motion. I want to know if they have a good respiratory system at baseline to make sure that breathing challenges are not getting in the way of proper tongue function. I want to know how the tongue is functioning. Are the intrinsic and extrinsic muscles of the tongue moving and turned on properly to be making the shapes that they need to make? Because if they're not, they still may not be, even if they get their tongue clipped.  I want to know if there is a positional change that could be really simple and helpful for a better latch to resolve all these issues.

I want to know how they're coordinating and swallowing to manage the current milk flow rate that they're getting. Are they using tongue position to block or protect their airway?  The list goes on, and depending on what barriers may be present, it might indicate a different person to help try to remove barriers. The more barriers we remove, the more we can see what can the tongue actually do, and what is the full function of it.  This is by no means an exhaustive list of the things that a professional might be looking for in order to assess the tongue and assess the full feeding.

Now, bear in mind, not all families who are experiencing nursing pain or feeding difficulties want to go this route because the way our system is set up, it takes a lot of time and money to see multiple professionals. And you know, families with newborns who aren't eating well, you know what they don't have? Usually a lot of time, money, and energy at their disposal.  But still, if the families are not requesting a new level of care, then it isn't likely to come.

I just wanted to give you some examples because, again, it is just not enough to open the mouth and look at the tongue. We really have to consider if the baby has any other contributing factors. So in this way, I tend to agree with some of the specialists that are quoted in the article that yes, I believe that tongue tie can exist, but when someone just looks at your baby's tongue, it's just not enough to diagnose a tongue tie and warrant a revision.

In my opinion, a quick evaluation should not warrant a pricey permanent procedure. We must look at the body as a whole because tongue function does not happen in isolation. We also have to look at each mother and baby as its own unique dyad and consider what their goals are, where their beliefs lie, and what's most important to them.

I hope this was a helpful response to the New York Times article, which did get some guff as far as throwing professionals under the bus. Many professionals are really well meaning, but I just love that this article really prompts conversation, and hopefully it will prompt good conversation. I hope that this episode also gave you some food for thought and some ideas on switching your perspective of tongue tie into a more kind of gray, whole body approach.

At the end of the day, I just really encourage you to find the professional that you feel comfortable with, that you trust, and really try to listen to your gut on these issues.  If someone's diagnosing your baby with a tongue tie without seeing them, or with only looking in the oral cavity quickly, and can't really explain why other things are being ruled out, to me this is a bit of a red flag and I would encourage you, again, to listen to your gut as much as possible.

If you feel confident about the diagnosis, and you're prepared for the surgery, and the recovery implications as well as the recovery plan, then I trust you to make the final decision for your baby. And that is the end of this episode for today. I do have a link to the original article down below if you would like to read it. (Just a caution, there are some, you know, kind of hard to read stories about tongue tie releases that did not go so well. So I just want to give you a heads up if you are sensitive to reading things like that.)

Otherwise, I'll be here next week, and in the meantime, don't forget to listen to your gut, because you know your baby the best, Mama, even from day one.

Original Article Referred to in this Episode: https://www.nytimes.com/2023/12/18/health/tongue-tie-release-breastfeeding.html