A Breastfeeding Mom's Symptoms Are as Important as the Baby's

My last post detailed how tongue-tie and lip-tie can have significant adverse effects on the baby trying to nurse. This post will detail how a poor latch from tongue-tie or lip-tie can harm mom.

While most moms would prefer to exclusively breastfeed, negative symptoms at the breast may prevent it from being possible.

I often hear from moms that they feel like they're being selfish for putting their children through a procedure, particularly if that child is not experiencing any significant negative effects from breastfeeding. The argument against this sentiment is quite easy: anything that jeopardizes a mom's ability to breastfeed obviously puts the baby in harm's way. I maintain that babies should nurse for as long as possible without having some external situation forcing them to wean. Sometimes, that means focusing on the mom's symptoms instead of the baby's if her symptoms are worse.

What are some of the consequences for mom when the baby has a poor latch from tongue-tie or lip-tie?

• Nipple damage - These are among the most obvious consequences of a baby's poor latch from tongue or lip restrictions. If the baby cannot flange out their lip appropriately, the lip will roll inwards, making the latch more shallow. Additionally, if the tongue is restricted, it cannot appropriately cup and lift the breast within the oral cavity, and the lower gumline is exposed. When the lower gum and the upper lip are what is being used to hold on to the breast, nipple damage can occur. Early signs include a change in the nipple shape following breastfeeding. Nipples can be creased or flattened, or can come out white (blanching) from compression and restriction of blood flow. If trauma is persistent or severe, mom can experience cracking, bruising or blistering. When it is most severe, mom can experience bleeding and scabbing. Even after the latch does improve with treatment, some moms have experienced long term nerve damage that may not improve with time.
• Pain - This is one of the most common symptoms a mom experiences. Unfortunately, it's one of the most commonly dismissed symptoms by healthcare providers. Too many are quick to propagate the myth that painful breastfeeding is normal. Painful breastfeeding is common, but that does not mean that it is normal. Is there a sensitivity at the beginning of breastfeeding? Sure, but that isn't what I am describing here. The often toe-curling pain that accompanies breastfeeding a tongue-tied baby can be severe enough that mom will begin to dread it. Even when the pain isn't as bad, but is still present, the persistence of the discomfort can most definitely lead to premature weaning.
• Poor or incomplete breast drainage - There are numerous reasons why a baby won't empty a breast. These include prematurely falling asleep at the breast, being unable to form an appropriate seal or being unable to use the tongue appropriately to draw enough negative intraoral pressure to nurse. Whatever the reason, stagnant milk can be indicative of future problems with lessening milk supply. Additionally, it can be a precursor to mastitis.
• Breast disease - Ultimately, if anything threatens the health of the breasts, milk supply becomes jeopardized. In the setting of a traumatic latch, mom's nipples can become infected from cracking. This can lead to breast abscesses. Surface trauma can lead to inoculation with thrush, which can be transferred to and from the baby. Superficial bacterial infections, blebs, or plugged ducts can also result. One of the more miserable results from a poor latch is mastitis, often recurrent. If a mom has recurrent episodes of mastitis, I always look for a restriction in the mouth as a primary potential cause. Mastitis can lead to hospitalization and a sudden drop in milk supply, so it must be taken seriously.

It is critical that we look at breastfeeding as a tag-team effort if we are going to achieve long term success in babies who are otherwise anatomically unable to latch appropriately. If a baby is completely healthy and growing well but mom is persistently sick or too traumatized to frequently breastfeed, we have failed to treat the dyad in a supportive fashion. We must stop dismissing mom's symptoms and we must stop propagating a culture where it is somehow ok to ignore the needs of the mom.

Weight Gain is Not the Only Marker of Successful Breastfeeding

Where I practice in Portland, Oregon, I'm very fortunate to have a great network of ancillary services supporting breastfeeding moms, making it a great breastfeeding environment. On the more frustrating side, however, is that some insurance companies refuse to authorize releasing a tongue-tie or lip-tie for breastfeeding. Among the many reasons cited is: "Baby's weight gain has not suffered".

This post will detail many of the potential problems a baby can have when breastfeeding is not optimal, and will show you why weight gain is only part of the picture. The assumption here is that our common goal is to keep the baby on the breast as long as possible (there are numerous studies showing improved long-term health benefits when babies breastfeed compared to formula feed). There are cost advantages to breastfeeding as well. A 2009 cost analysis study in Pediatrics found that low breastfeeding rates cost the United States $13 billion. Additionally, a study by the USDA showed that $3.6 billion could be saved each year if 50% of children were breastfed for at least 6 months.Therefore, anything that lessens breastfeeding duration will cost the insurance company (and society) a greater financial burden.  

• Falling asleep while nursing - This is one of the most common symptoms that I encounter with tongue-tied babies. The most plausible explanation for why this occurs is that babies with tongue-tie have to exert much more effort to attempt to breastfeed than babies who can nurse normally. When it's combined with frequent nursing sessions (when they aren't fully satiated after the previous feedings), stamina becomes a problem. Why the insurance company should care: this symptom can lead to cessation of breastfeeding because of frustration or fatigue on mom's part.
• Poor quality latch - Obviously, if the baby's oral anatomy prevents them from performing the necessary movements to latch on to the breast, the latch can be visibly abnormal. Babies with tongue-tie or lip-tie aren't able to widely open their mouths. (Try this yourself - first, open your mouth as wide as you can and then close it. Next, roll your upper lip inwards against your gumline, hold it there, and then open your mouth again. You will feel significant tension that will limit your ability to open your mouth). Even if the baby starts out opening widely and gets on to the breast appropriately, it's not typically a sustainable motion so they slide down on to the end of the nipple, which affects their efficiency of nursing. Why the insurance company should care: an inappropriate latch is the root cause of many other breastfeeding problems, all of which threaten the success of long-term breastfeeding.
• Reflux and colic symptoms - I am not going to claim that all infantile reflux and colic is caused by tongue-tie and lip-tie. However, babies who have tongue-tie and lip-tie commonly take in significant amounts of air. With an inability to flange out the upper lip and an inability to appropriately cup the breast with the tongue comes a shallower, more bottle-like latch. This allows these babies to take in a significant amount of air. Sometimes, an audible clicking or gulping sound is heard. Parents can often feel or hear air in their child's stomach, and burping doesn't always work to get it out. This air can act as propellant, causing silent reflux, spitting up or even projectile vomiting. The baby can have significant abdominal discomfort as a result. Why the insurance company should care: infant reflux is often medicated. While generic Zantac is often a first-line medication, many go on to use more costly medications like Prevacid.
• Gumming or chewing the nipple - While some may describe this as a lazy latch, babies with tongue-tie or lip-tie are sometimes physically unable to avoid using their gums or to chew. If the upper lip doesn't flange out, the depth of the latch suffers. If the tongue cannot elevate and cup the breast while cushioning the lower gumline, what results is the baby using the lower gums and the outside of the upper lip to hold on to the nipple. Why the insurance company should care: this is one of the primary causes of nipple pain. Moms who experience pain are much more likely to wean prematurely, again causing long-term health problems (and subsequently, costs).

• Lip blisters - When an easy, classic breastfeeding latch isn't attainable because of anatomy, some very determined babies will do anything they can to hold on to the nipple. This includes using both lips, like a sucker fish. The most common manifestation of inappropriate reliance on the lips to hold on is a central upper lip blister. While common in the first few weeks of life because of the delicate upper lip skin, I feel that the persistence of blisters beyond the first few months of life is indicative of an upper lip tie. When examining children, it's important to analyze both lips for swelling. Any degree of swelling of the lower lip is cause for suspicion of underlying tongue-tie or lip-tie. Swelling along the sides of the upper lip (outside of the central blisters) is also cause for concern. Rarely, as pictured here, lip blistering can be extremely severe. Why the insurance company should care: trauma to the baby's lips can prevent the baby from continuing to breastfeed. It can be painful for the baby and can occur in the setting of severe trauma to the nipples.

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Upper lip blisters can be indicative of a baby's inability to flange outward.

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A severe case of upper and lower lip blistering. This severity is quite uncommon.

• Short sleep episodes - Certainly, there are a multitude of reasons for a baby to have frequent nocturnal awakenings. I'll be the first to tell you that there aren't data to support this claim. All I can say is that my experience has shown me that babies sleep better when they're satiated and when they aren't refluxing. When they're hungry, they wake up. When they're uncomfortable from acid going up, they wake up. When babies wake up frequently, moms sleep less. While sleep duration occasionally increases following a tongue or lip procedure, this should never be the sole reason why someone pursues revision. Why the insurance company should care: disrupted sleep cycles jeopardize the duration of breastfeeding. In some cases, poor sleep can exacerbate postpartum depression as well. Both can cost insurers money.
• Inability to hold a pacifier in - I'm not going to address the pro's and con's of pacifier use. It is quite common for a baby with a tongue-tie or lip-tie to have an inability to hold in a pacifier, regardless of pacifier shape. This often improves with revision. This has little to do with insurance companies.

This child was treated at 6 months of age. Prior to the treatment, the child had been dropping percentiles in weight. Despite having reattachment that needed a secondary procedure 3 months later, this child nearly immediately began to gain weight. This change in weight post-procedure is common for children who can't gain weight because of a tongue-tie or lip-tie.

• Poor weight gain - This symptom is the most concerning to parents and the baby's doctor. It's the symptom that convinces doctors to act, either by treating the baby or referring them to a specialist. It is also the symptom that insurance companies seem to focus on. This can manifest as losing significant amount of weight immediately after birth (many cite 10% of weight loss as a concerning amount). It can also take the form of a prolonged time period until the baby returns to birth weight. Why an insurance company should care: Weight loss often undermines a mother's attempt at exclusively feeding their children breast milk. Reliance on formula to bolster a baby's weight increases the chances that the mother will stop nursing and/or pumping altogether, resulting in long-term costs to the insurance company.

Finally, I think we must analyze the various reasons how a baby can gain weight when they have a tongue-tie and/or lip-tie. Early on, a mom's supply can be strong enough where it allows the baby to drink rather than nurse. This is especially true at letdown or in situations where mom has oversupply. When their caloric demands are lower, this drinking is sufficient to maintain growth. The insurance company may deny treatment if presented with a request during this period of life. But as the baby grows and caloric demands increase, weight gain can definitely fall off later. Secondly, supplementation with either pumped milk, donor milk or formula can be needed to keep the baby's weight up. An insurance company will look at the raw numbers but doesn't focus on how that weight was sustained. I will contend that babies who are exclusively breastfed have a better chance at long-term breastfeeding than babies dependent on pumped milk. Finally, a determined mother can power through all of the negative consequences of poor breastfeeding quality in an effort to keep her child healthy. That does not mean that the relationship is a healthy one. Looking at weight alone does not give the insurance company the whole picture.

As I will show you in future posts, there are distinct advantages to breastfeeding when compared to bottle feeding. I think it's overly simplistic to think of breastfeeding as just nourishment for the baby. Ignoring the symptoms that can complicate getting a baby to latch appropriately and feed normally can have detrimental long-term effects. We need to broaden our understanding of breastfeeding problems so that we may address what we can to improve the success of the dyad.

Not All Breastfeeding Problems Are Caused by Tongue-Tie

As is the case with the identification of any new medical problem, there is bound to be excitement about helping those in need. Sometimes, that excitement can lead to false attribution of a problem to that "new" diagnosis. While tongue-tie or upper lip-tie are not technically new diagnoses, the correlation between tight frenula and breastfeeding problems is a relatively new one. Because I treat many babies each year where babies are having problems from tight frenula, I inevitably end up turning away many babies who aren't needing treatment.

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Not every nail needs the same hammer. Tongue-tie and lip-tie may cause some, but not all, breastfeeding problems.

The first place any mom and baby should go when breastfeeding problems arise is an IBCLC (international board certified lactation consultant). Here is a great post on how to choose a lactation consultant. 

There are many potential causes of breastfeeding problems. I asked a group of great lactation consultants for a list of other causes for breastfeeding problems (specifically, pain). Here's what they came up with:

• Technique problems - This includes poor latch technique, especially with positioning. Often, inexperienced moms picture breastfeeding like how a baby feeds from a bottle (this can also happen if the baby has nipple confusion when going from a bottle to the breast). They present the nipple instead of the breast, which can cause pain. Poor positioning can certainly be a problem (often caused by the wrong kind of pillow or how the baby is held). Nursing an acrobatic toddler who may forget that he/she is breastfeeding when something more interesting comes by can cause pain.

• Anatomical problems in the baby - There are anatomical issues other than tongue-tie or lip-tie that negatively impact breastfeeding. One of the most common is tight oral/neck musculature. This can stem from a traumatic birth, suboptimal intrauterine positioning, or torticollis. Congenital disorders of the baby can affect their oral or facial anatomy that can make breastfeeding extremely difficult (cleft lip or palate, for instance). 
• Specific factors affecting the breasts - While some of these factors can be caused by tongue-tie or lip-tie, diseases of the breasts themselves can be the sole cause of problems. Raynaud's disease or vasospasm can make breastfeeding extremely painful. Overly engorged breasts may make it difficult for the baby to latch on to a taut breast. Mastitis, plugged ducts, thrush and blebs can come from trauma during biting or chewing by the baby. Some moms have allergic reactions to products applied directly to the breasts (or to fragrances in toiletries or laundry). A small subset of moms have pain with letdown, or a painful milk ejection reflex. Others have severe negative emotions associated with letdown, called a dysphoric milk ejection reflex. A history of nipple piercings may have caused nerve sensitivity for mom during breastfeeding.
• Psychological or other health factors that can affect breastfeeding - Postpartum depression can magnify any discomfort at the breast or can be interpreted as discomfort. This becomes especially apparent when the baby has other reasons to have breastfeeding problems (specifically with tongue-tie or lip-tie). Any history of sexual abuse can become a major hurdle for successful breastfeeding. Primary pain disorders like fibromyalgia can also become very problematic for a mom who is trying to nurse. Some moms experience increased discomfort when menstruation returns.
• Equipment misuse - Improper use of a nipple shield can certainly cause problems breastfeeding, either leading to inefficiency of transfer, frustration for the baby or frank pain for mom. Additionally, improper use of a breast pump can cause undue pressure and pain on the nipples.

This list is by no means exhaustive. It is only meant to demonstrate that a mom who is experiencing difficulty with breastfeeding needs to visit someone who is versed in diagnosing these potential problems. Obviously, tongue-tie and lip-tie can play a role in breastfeeding problems, but I worry about the panacea-like mentality that can result when trying to solve a problem for a mom and baby. This is made even more likely given the desperation these dyads feel when something so basic and important becomes difficult.

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.