Diagnosing Tongue-Tie in a Baby is Not a Fad

When a new mom and baby come to see me in the office, I always ask them if they were referred by someone or if they did their own research and came on their own. Specifically, I ask them about the attitudes of their pediatrician, midwife or family practitioner with respect to breastfeeding. I also ask what they think about them coming to my office to try and get a better sense of the idealogical hurdles that exist in my medical community.

One of the most frequent things I hear is that primary care providers say something to the effect of "Oh, diagnosing tongue-tie is just a fad" or "This tongue-tie business is just something new that some people are doing".

While that sentiment is frustrating, I think it is important to address the various reasons why we may be seeing and hearing more about tongue-tie and lip-tie as a cause of breastfeeding problems. As is the case with any new paradigm shift in medicine, the initial response is almost always one of conservatism and doubt. 

Why the surge in babies who are felt to have tongue-tie and/or lip-tie as potential causes of breastfeeding problems? 

• Genetics: There are several studies that examine the potential inheritance patterns of ankyloglossia (tongue-tie). 

1. Acevedo et al in 2010 identified a Brazilian family that had both ankyloglossia and dental abnormalities. While it only looked at 12 patients, the study demonstrated an autosomal dominant pattern of inheritance. (For clarification, an autosomal gene is located on one of the 22 chromosomes that is NOT an X or Y chromosome. A dominant gene needs only one of the two copies to be passed to cause a specific effect - a 50/50 chance of getting the gene.) 
2. Trying to answer the question why males are more affected by ankyloglossia than females, a Korean study by Han et al in 2012 identified potential X-linked patterns of inheritance.
3. Klockars in 2009 identified that the prevalence of ankyloglossia in the population is approximately 4-5% and that inheritance is also passed in an autosomal dominant fashion (like Acevedo).

What these studies demonstrate to us is that there is likely some genetic predisposition towards ankyloglossia. My own observation in my patients is that greater than 50% of babies have a relative who also has ankyloglossia. As is the case with many genetic disorders, if a gene is passed from generation to generation, and that gene is potentially passed in a dominant fashion, more and more babies will be affected by that gene with each new generation and with increasing population size (assuming those affected will be able to have kids of their own).

• More moms are breastfeeding now than they were previously. As rates of breastfeeding increase, the number of moms who have difficulty with breastfeeding is bound to increase. Before the formula revolution, doctors would routinely check a baby for ankyloglossia in the newborn nursery and perform a frenotomy if the frenulum looked tight. There are historical reports of midwives using a long and sharp pinky nail to lance the frenulum in newborns who had difficulty at the breast. Was it a fad then too?
• A major argument I make is that I am attributing a baby's breastfeeding problems to a specific set of anatomical problems. A doctor who doesn't know about these correlations may simply pass along what was taught to them in residency. If their mentors taught them common myths about difficulty breastfeeding, babies would be described as "lazy" or having a "small mouth or small tongue" as potential excuses for problems. If those excuses didn't seem to hold, the mom would also be blamed for not making enough milk or having nipples that weren't conducive to breastfeeding. I don't think these excuses are evolutionarily plausible explanations for why babies have problems breastfeeding. You would never hear a doctor explain away a patient's low oxygen level by saying "You just have lazy lungs." I feel that we must find the anatomical reason why some babies can't breastfeed and I will make the argument that many of these babies have problems because of restrictions at the tongue or upper lip.

Future posts will look at the evidence in favor of releasing tongue-ties when those ties are the cause of breastfeeding problems. Ironically, there are no data that argue against treating tongue-tie for babies having breastfeeding problems. When people describe this focus on ankyloglossia and how it relates to breastfeeding as a fad, it is insulting as it doesn't acknowledge the struggles of the mom or the baby. It minimizes the frustrations felt by the dyad and does nothing to help solve the actual problem at hand.

I am asking the doctors and lactation consultants to approach this problem analytically rather than passing old dogma on to their patients. 

How to Examine a Baby for Tongue-Tie or Lip-Tie

The only purpose of this post is to demonstrate how to examine a baby who may have a tongue-tie or lip-tie. Future posts will help to explain the symptoms of intraoral restrictions that can impact breastfeeding.

Our first year of medical school includes proper examination technique. For instance, if you don't know where to put your stethoscope, you might miss a heart murmur. Unfortunately, we aren't instructed on how to examine a baby who is having breastfeeding problems. If you don't know how to properly examine a baby for tongue-tie or lip-tie, you will be more inclined to say that they don't exist.

The first step is adequate illumination. A headlight is a great option and critical in freeing up both hands. There are very affordable (under $25 typically) LED camping headlights that can be used to get a great view of the mouth.

The next step is proper positioning. This is the most common error made by medical professionals looking for tongue-tie or lip-tie. The provider and the parent should face each other, knees touching. The baby is laid on the lap of this makeshift table, head towards the examiner. You cannot adequately evaluate a baby's mouth when they are sitting in a parent's lap in an upright position.

The goal of the examination is to try and determine the degree of tension of the frenulum of the lip and tongue on the surrounding tissue. Does the baby react or not? If it seems uncomfortable to them, they often squirm. If the frenulum is tight, it will often turn white or blanch. Look at where the frenulum is attaching to the gumline or tongue.

Many providers recommend stretching exercises after a releasing procedure to avoid the possibility of reattachment of the wounds. In those instances, a parent would turn the baby so that the head is in their laps and the feet pointing away. Alternatively, the baby can lay on a changing table or mattress as the parent positions themselves about the baby to expose the lip and tongue for stretching.

This technique is also the preferred technique for obtaining pictures of the lip or tongue. You will need a second assistant to take the pictures once you have the lip and tongue in proper position.

Breastfeeding Difficulty and Family Support

Imagine a disease that came on suddenly and left doctors baffled. Imagine that it was causing you pain and leaving you feeling completely helpless. Then imagine that your spouse didn't believe that anything was wrong. 

Unfortunately, if that "disease" is a mother's difficulty breastfeeding her child, this scenario is all too common. I hear stories like this on a frequent basis and we must do what we can to anticipate and stop such stories from occurring. 

Disclaimer: for the purposes of this post, I will address the father as the family member who is casting doubt. But we must be realistic that others can play that role: same sex partners who aren't doing the breastfeeding, extended family members, close friends, and on occasion, mom herself. I have even met families where mom is in denial that a problem exists but dad understands that there's a problem and pursues evaluation and treatment. 

So what kind of things are said? 

• "I don't see anything wrong." This is tacit denial that can be very hard to address. Often, it's because dad doesn't understand the significance of breastfeeding. Often, it's followed by "formula is just as good" or "you can just pump". To combat this statement thoroughly is beyond the scope of this post and I do not want to fuel the breast vs bottle debate. My role as a breastfeeding specialist is to listen to the family, and most who see me want to breastfeed. So dad has to understand that breastfed children have immunological and facial developmental advantages over bottlefed babies. Mom and baby also get tremendous psychological benefit from maintaining a nursing relationship for as long as possible. 
•  "I don't want to spend the money." While it sounds harsh, the reality is that a baby who was just born brings significant medical bills. Adding on new office visits and a procedure in the event of tongue-tie or lip-tie just compounds the problem. While it is a cost up front, the cost of formula and diminished immune capabilities can easily be more costly in the future. Dad's denial becomes especially apparent when the baby needs a follow-up procedure because of reattachment or lack of symptom improvement. The dad sees the first procedure as a failure and isn't hopeful that a second procedure (and cost) is beneficial. That's why I don't charge for follow-up visits or redo procedures for 6 months, which gives us ample time to see the results. 
• "I don't want my child to have a procedure done." This one is based on fear and a lack of information. 

I frequently point out to moms who are in this situation that it is reasonable for a dad to have this opinion if they are going to do the amount of reading and research that mom has done. If, however, they are going to have this opinion without doing any research at all, then it amounts to them being scared. I'm not saying that fear is unnatural -- quite the contrary. It's just important to address the reason why they are scared before you can move forward.

• "Our pediatrician said nothing is wrong." This also applies to family practitioners and lactation consultants. Surprisingly, this argument is easy to deflate. If you first realize that most pediatricians have very little training in breastfeeding medicine, my argument is that their opinion doesn't carry weight in these instances. If your child had a compound leg fracture, you would visit an orthopedic surgeon. If you returned to your pediatrician and they said "Don't worry, it's not going to be a problem so just hold off on treatment", you'd likely find a new pediatrician. This is the real crux of my argument. Pediatricians and family practitioners are very adept at dealing with moms who have no breastfeeding problems. They should encourage it as much as possible. But if there is a problem in breastfeeding, they usually don't know how to intervene because they haven't been trained to deal with that specific scenario. In my opinion, their opinion doesn't hold weight in this specific case.
• "We already saw an ENT (or other specialist) and they said that tongue-tie doesn't affect breastfeeding." The argument here is similar to the previous one. Just because a doctor is a specialist, it doesn't mean that the specialist knows how to treat this specific problem. As I alluded to in another post, like many ENT's, I received no education in breastfeeding medicine during my training. I pursued vast amounts of reading, studying, and consulting with other breastfeeding specialists for almost two years to educate myself about the association between tongue-tie and breastfeeding problems. My desire to further my education in this specific arena is relatively uncommon. For the majority of ENT's, however, the mom/dad/PCP all assume that the specialist knows what they're talking about, so any subsequent denial of association between tongue-tie and breastfeeding problems erroneously carries weight (and encourages the pediatrician to say the same thing).

Breastfeeding difficulty can contribute to postpartum depression and can taint the relationship between mom and baby. Adding spousal or family disapproval of pursuing a procedure that might help alleviate these problems often dooms them to fail. If you have a family member who is doubting what you think might be the case, have them read this post or have them email me. Have them join one of the many support groups to just read what is going on in families all over the world to help them understand that they aren't alone in having problems, and that a solution may be out there.

The Myths About Painful Breastfeeding

Throughout this blog, I will do my best to try and address what is commonly said by doctors, dentists and lactation consultants who don't understand the correlation between tongue-tie and lip-tie and poor breastfeeding. I think that we must first disprove what they think they know. I think these myths are born out of a complete lack of education, and with time, hopefully we won't hear them as frequently.

I've compiled a list of phrases that are often used when a mom is experiencing pain or other difficulties during breastfeeding. I will try to show you why they are inaccurate and how knowing them before you talk to your doctor can be empowering.

• "It's normal to have pain (or bleeding or cracking)" often combined with "Your nipples need to just toughen up". These statements are even more concerning when they are said by someone who has never breastfed. I don't know how this thought process is ok in any way. If a mom, whether she's a first-time nursing mom or a nursing pro, is experiencing nipple damage, how can anyone say that continuing the status quo is appropriate? If it were any other scenario where you had a wound, would you accept that advice from a doctor? If I had a deep cut on my hand, and my doctor said "This is the first time you've had a deep cut there, so your hand needs to toughen up", I'd be pretty upset.
• "Your baby is a lazy eater". Newborn babies act on instinct. There is no capacity for a baby to choose to be a lazy eater. If the baby is trying to nurse and cannot do so, they will often try and compensate in any way they can. Sometimes, this forces them to use a tremendous amount of energy trying to nurse, and they fall asleep at the breast (sometimes very quickly). Also, if they aren't appropriately nourished due to a delay in diagnosis, they may not have the energy capacity to endure long feeding sessions.

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• "You're not making enough milk". Yes, that may be true. Milk production is based on appropriate breast stimulation. Early on, milk can be slow to come in. Later, a mom's milk supply can decrease. But why? If a baby is unable to stimulate breast tissue and instead is sliding down on to the end of the nipple because of anatomical limitations, then it gives us a reason for why mom may be having milk supply issues. But to say this phrase and then NOT look for a reason why is just inappropriate. For example, if you needed oxygen but I never looked for why you need additional oxygen, I would not be doing my job.

• "Your baby has a small tongue". This is often coupled with either "Your nipples are too big" or "Your baby's mouth is too small". All babies have small tongues. All babies' tongues are smaller than a mom's breast. Considering that these comments typically come from a non-ENT doctor, I don't exactly understand how they've come up with this explanation. Am I supposed to believe that through all of human evolution, babies who suffered from this horrible "small mouth syndrome" just never breastfed? Please show me one study that has ever compared tongue size in babies who do and don't have breastfeeding problems. That study doesn't exist.
• "Tongue tie/lip tie doesn't cause problems with breastfeeding". This typically comes from the mouths of the uninformed specialist (ENT, oral surgeon or pediatric dentist). What this actually translates into is "Like Dr. Ghaheri several years ago, I had no interest in breastfeeding medicine. Because I have no formal training, it's easier for me to sound authoritative and say that there's no correlation." This blog is dedicated to changing that misinformation.
• "The frenulum will stretch over time". How much time? How long should a mom wait before she decides that this statement may not be true? How long should a baby who can't feed normally wait? Rather than seeking an assessment or considering a frenotomy, doctors and lactation consultants all too often expect a newborn to wait. Furthermore, there has never been a single study to show that frenula actually stretch. In my experience, what actually stretches are what the frenula are attached to. In the battle between muscle movement and static bone, muscle always wins. This translates into bone remodeling and can actually move teeth. (I've seen this in older children and adults who get braces too - once the braces come off, if their ties haven't been addressed the teeth will continue to move because of the tension).

This baby fell and tore his lip tie. See how much tissue is still left down on the gumline? This can predispose the baby to reattachment and can still cause dental issues.

• "One day, your baby will fall and rip their lip tie and it will take care of itself". I don't know about you, but I can't think of another medical condition where the plan is to wait for spontaneous trauma. "Oh, you broke your nose? Wait until the next broken nose and it might straighten out." Even if trauma does happen (it usually doesn't), the lip tie is always incompletely revised and causes persistent dental problems, in addition to typically reattaching.

• "Your baby can stick out their tongue, so they're not tongue tied". This one is the most commonly said. It's such a simple statement that can immediately make sense to the parents. But here's the problem: babies don't stick their tongues outside of their mouths while nursing! What's also overlooked is that the tongue is capable of many different movements. I don't know who arbitrarily decided that successfully completing one of these movements means that all other movements are normal, but that's simply not the case. The most important motion of the tongue for babies is elevation of the tongue within the oral cavity after cupping the breast. And the only way you can assess that is by putting your fingers inside the baby's mouth and lifting the tongue up. Most people don't do that, so I don't recognize the statement as valid.

I've heard more interesting statements as well, but I chose these myths because they're the most commonly used in convincing moms that nothing could be or should be done. Educate yourself before talking to your doctor, dentist or lactation consultant. If it's evident that you know more than they do, you can also try to educate them.

[Author's note: This post was edited to remove portions that were distracting from the message that I'm trying to send. As this has affected me in my personal life, I sometimes allow my passion and excitement to get ahead of my duty to re-read what I've written.]