Parenting

Our breastfeeding nightmare: overcoming a tongue-tie (ankyloglossia)

Our breastfeeding nightmare: overcoming a tongue-tie (ankyloglossia) thumbnail
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Our family overcame a tongue-tied baby (a condition known as ankyloglossia) and went on to successfully breastfeed. Here’s what we learned through the process… 


Our purpose in writing this article is threefold:

  1. More people should know that breastfeeding is often incredibly difficult for moms (especially first-time moms). 
  2. Tongue-ties are frequently undiagnosed or misdiagnosed by pediatricians and other medical professionals, causing moms to wrongly blame themselves for breastfeeding problems or give up on breastfeeding prematurely. 
  3. If you have a tongue-tied baby, you’re not alone (far from it) — and there are steps you can take if you want to continue breastfeeding. 
Sebastian asks that you keep reading through the difficult parts of this article and make it all the way to the happy ending!

Sebastian asks that you keep reading through the difficult parts of this article and make it all the way to the happy ending.

Context: how our breastfeeding problems started 

Weeks 1-2

Sebastian, our baby, was born Dec 14, 2019, weighing 7 pounds 3 ounces. Luckily, everything went as smoothly as a birth could possibly go. 

Over the next day, Sebastian was examined by numerous nurses and two of the hospital’s lactation consultants also came by to evaluate him. No problems were noted beyond jaundice.  

In case you don’t know, 50-60% of all newborns are born jaundiced, as was Sebastian. Typically, it takes 2-3 weeks for a baby’s body to get rid of the excess bilirubin that causes jaundice. 

In the meantime, they can be a little more tired and low-energy. Not a big deal, although it can be nerve racking when you’re an inexperienced first-time parent. 

Sebastian started breastfeeding within an hour after his birth, and we intended for him to be an exclusively breastfed baby. As far as we were concerned, breastfeeding was going to be a piece of cake. 

Typically, babies actually lose about 5% of their weight during their first week postpartum. Weight gain in bottle/formula-fed babies typically happens faster than in breastfed babies because there is no waiting for mom’s milk supply to come in. Pediatricians want to see weight gain start happening in Weeks 2-3. If there’s no weight gain by Week 3, they begin to get concerned.       

Since Sebastian is our first baby, we didn’t have any experience to draw on based on what “normal” breastfeeding looks like or what a normal breastfeeding baby acts like. We had to rely on the experience and expertise of our medical professionals to help us navigate. 

During our Week 1 pediatrician appointment, Sebastian’s bilirubin levels were high (but not worrisome) and he weighed in at 6lb 9oz, losing about 10 ounces from his birthweight. This is not an abnormal first week weight loss, so nothing much to worry about.  

During our Week 2 pediatrician appointment, he weighed in at 6lb 13oz, gaining 4 ounces from the previous week. His bilirubin levels were still high, but nothing to worry about since he was gaining weight  We were examined by our pediatrician and no issues of concern were noted.  

Our next appointment was scheduled for Week 4. 

Week 3 – “Some moms just don’t make enough milk.” 

During Week 3, Sebastian was acting more grumpy and tired — or at least Susan thought so based on the couple weeks of prior experience we had to go on. He was doing a lot of cluster feeding (babies typically do this to try to increase milk supply), but something seemed off. She also thought he looked like he was losing weight. Call it a mother’s intuition.

We contacted our pediatrician’s office and made an immediate appointment to meet with their in-house lactation consultant. It was late in Week 3. At the weigh-in, Sebastian had actually lost a few ounces from the prior week. He was now 6lb 10.5 oz, putting him in the 3rd percentile of weight for his age.

We freaked out. Why was our baby not gaining weight? Was he starving? 

Susan had already begun internalizing the problem, viewing herself as the cause. No words of encouragement and support can overcome the onslaught of negative emotions arising from the combination of postpartum hormones, sleep deprivation, and breastfeeding problems. 

Upon further inspection, the lactation consultant at our pediatrician’s office tried to help Susan feel better by saying, “some moms just can’t make enough milk” sentiments that were echoed by our pediatrician. However, rather than helping, these words struck Susan like a dagger to the heart – she felt like she was broken.

“Some moms just can’t make enough milk,” isn’t a helpful or productive thing to tell a mom in this situation since: 1) it assigns blame to the mom, and 2) it doesn’t get to the “why” of the situation or help lay the groundwork for an evidence-based path forward.

To this day, Susan still finds this statement infuriating. In our opinion, if a lactation consultant tells you this and you’re intent on continuing to breastfeed, you should find a different lactation consultant.   

As we came to find out later (via the book Making More Milk), unless there’s an underlying medical condition in mom or baby, nearly every mom actually can make enough milk for their baby. 

We should also note that neither our pediatrician or their in-house lactation consultant — both of whom are parents — had success breastfeeding their own babies. The majority of the other moms in our midwifery Centering class also found breastfeeding to be really difficult.  

Why did no one tell us that breastfeeding would be so hard, we wondered?

Exhausted and desperate, we left our Week 3 pediatrician’s appointment and immediately went out and got the best organic formula we could find (we ended up getting Holle Bio). Then we began syringe feeding Sebastian via a small tube taped to Susan’s breast, so that: 1) he was still getting some breast milk, and 2) he’d continue to associate the breast as his food source. 

Syringe feeding Sebastian.

Syringe feeding Sebastian.

Susan also started pumping frequently (12x per day in 1.5 hr increments) with a Spectra S1 throughout the day and night to make sure Sebastian had as much breastmilk in his diet as possible. Each feeding required both of our undivided attentions and took at least one hour. This meant our lives were pretty much dedicated to feeding Sebastian until things turned around. 

The next day, Jan 3, Sebastian had a followup appointment with the pediatrician. He’d put on two ounces, weighing in at 6lb 12.5oz and his bilirubin levels were much improved as well.

We felt relieved but also confused and sad. We were also anxious about how long we could possibly continue to feed him under this regimen given the time requirements, but we hoped things would change for the better. 

Week 4

During the fourth week, the small tube/syringe feeding method was causing too much pain for Susan to continue. We broke down and got a low-flow BPA-free bottle recommended by the pediatrician’s lactation consultant.

We’d start a feeding session with Sebastian on the breast then switch to a bottle to make sure he got enough food. While Susan pumped to try to increase her supply, I’d pace feed Sebastian via the bottle. (Pace feeding is a slow-feeding process that’s supposed to help ensure a baby doesn’t develop a strong preference for a bottle vs an actual breast.) This is known as “triple feeding,” a process which takes a long time with a normal-feeding baby but an enormous amount of time with a baby who isn’t feeding normally. 

My view of the world for many hours of many days during the first couple months of Sebastian's life. On a positive note, I did manage to watch every Ken Burns history documentary on NetFlix.

My view of the world for many hours of many days during the first couple months of Sebastian’s life. On a positive note, I did manage to watch every Ken Burns history documentary on Netflix.

Between pumping and feeding, we were both spending 70+ hours per week to feed Sebastian. We didn’t know if this was normal, a necessary step towards normal, or something else. Despite pace feeding, Sebastian soon developed a strong preference for the bottle instead of Susan’s breast, which was also emotionally devastating for her. 

Susan really wanted to breastfeed, both for the emotional bond between mom and baby, and for the various health benefits of breastfeeding (for both mom and baby). And when The Tyrant gets something in her mind, you don’t want to get in the way.  

Susan holding Sebastian's tiny baby hand.

Susan holding Sebastian’s tiny baby hand.

Week 5

We were completely exhausted from lack of sleep and stress. My mom came up for a visit to help out.

Decades prior, she’d been very fortunate to have zero problems breastfeeding me or my brother. She was extremely supportive and kindly suggested: “You might want to talk to a qualified medical professional who has actually had success breastfeeding their own children.” 

Wise words.  

Susan has a clinical biology background and began digging into research papers, the reddit breastfeeding board r/breastfeeding (very helpful!), online support groups, and other resources for answers and a path forward. Turns out, not all lactation consultants are created equal…  

Week 6+

One of the most helpful online resources Susan found was a facebook group called “Legendairy Mamas,” (found via reddit) which describes itself thusly:

“We’re not your average lactation support group as we strive to deliver evidence-based breastfeeding education and best practices. Our admin team consists of several IBCLCs and CLCs who want to help you in reaching your nursing/pumping goals.” 

Through Legendairy Mamas (which also has a very helpful Instagram account), Susan found the person in our area who was the perfect match based on everything she’d learned: Meredith Wentzel, IBCLC, owner of Nourish Integrative Lactation & Wellness.

Meredith has years of experience running her own private practice, great patient ratings, and an impressive educational resume, including writing a 150 page thesis on ankyloglossia, aka “tongue-ties” during her IBCLC program training. 

She’s also highly respected in her field. At the International Consortium of Oral Ankylofrenula Professionals (ICAP) 2018 conference in Toronto, Meredith was nominated for the Unsung Hero Award for her work in helping to build local teams, advocating for better collaboration and better care for families struggling with TOTS. (TOTS is the acronym for “tethered oral tissues,” an umbrella term that includes ties of the tongue, lip, and buccal tissues.)

Oh, and Meredith successfully breastfed her three children! So, on February 5, Meredith came out to our house to do an in-person examination of Sebastian. Susan breastfed as Meredith watched… 

Based on the motions of Sebastian’s mouth and jaw plus the sounds he made while feeding, Meredith said she suspected he had a tongue-tie. Then she did a physical examination of his mouth which confirmed her suspicions. As it turned out, Sebastian had a fairly severe tongue-tie and lip-tie (a Type IV submucosal tongue tie and a Class IV lip tie).  

Meredith also took photos of Sebastian’s mouth and showed us why she’d reached that conclusion (these were included in a detailed report which she emailed us later). 

Pictures of Sebastian's tongue-tie (left) and lip-tie (right).

Pictures of Sebastian’s tongue-tie (left) and lip-tie (right).

What exactly is a tongue-tie (ankyloglossia)? 

A tongue-tie is a condition wherein the band of tissue that ties your tongue to the floor of your mouth is too large and/or taut, thereby tethering your tongue down and preventing it from having a full range of motion. As Meredith explained it, a tongue-tied baby trying to breastfeed properly is like someone trying to run a race with their shoelaces tied together.

Sebastian also had a lip-tie that was preventing his top lip from properly flanging up and back during breastfeeding, thereby preventing a good latch. According to Meredith, the vast majority of tongue-tied babies are also lip-tied.  

Beyond causing breastfeeding problems, undiagnosed and untreated tongue-ties can go on to cause speech impediments, oral hygiene issues, and other problems as a child gets older. So it’s important for formula feeding families to get proper diagnoses for ankyloglossia as well, not just breastfeeding families. 

After spending weeks not knowing what was causing all of our problems, it’s hard to put into words how comforting it was to finally have an answer — and for Susan, hope. We immediately felt as though a giant pressure gage had been released.

After all, it’s impossible to systematically and intentionally work towards a solution if you have no idea what’s causing a problem in the first place. 

Sebastian spending some time with the family ducks. This has nothing to do with breastfeeding, but we can't publish an article without at least mentioning our feathered family members.

Sebastian spending some time with the family ducks. This has nothing to do with breastfeeding, but we can’t publish an article without at least mentioning our feathered family members.

Why wasn’t our tongue-tie diagnosed by our doctor? 

Tongue-ties aren’t terribly rare. In fact, they’re present in 4-11% of babies, so you’d think pediatricians, lactation consultants, and other medical professionals would be on the lookout for them. 

So how did two lactation consultants at our hospital, our pediatrician, and our pediatrician’s lactation consultant all fail to notice a medical condition that took Meredith 5 minutes to identify — an oversight that caused our family nearly two months of agony?  

There’s an interesting and complicated dynamic afoot here… 

For starters, it comes down to what you’re trained to look for based on your medical specialization. According to researchers studying this issue:

“most lactation consultants believe tongue‐tie to be a frequent cause of infant breastfeeding difficulties… In marked contrast, 90% of paediatricians and 70% of otolaryngologists believe that tongue‐tie never, or rarely, causes a feeding problem.” 

Basically, most doctors in a position to diagnose tongue-ties don’t think they’re a problem when it comes to breastfeeding. Lactation consultants (assuming they’ve had specialized education and experience) might take the opposite perspective, but they can’t legally make a diagnosis.

All they can do is pass information on to the doctor who ultimately makes the formal diagnosis. If they work underneath doctors who don’t think tongue-ties/TOTS are even an issue, the parents/mom isn’t likely to get an accurate diagnosis..

When we talked to Meredith about this issue, she had some very helpful feedback that could prove invaluable for parents going through a similar experience to ours. Excerpts: 

“Training on how to observe how tongue-tie affects breastfeeding from a functional perspective is very limited in all professions, even with IBCLC training. Many times the focus is so much on weight gain that the mother is forgotten about as well as the potential long term implications of ties, or often known as tethered oral tissues (TOTS). Usually, it requires taking the initiative to seek out additional training, such as the TOTS training that I’ve been through. Here’s a directory parents can use to find TOTS Trained Professionals.”
 
There is a whole international organization that advocates for better education when it comes to TOTS: https://www.icapprofessionals.com/ so parents seeking a qualified lactation consultant may want to inquire about their membership in ICAP as well. 

Meredith also recommends people read the article, How the system can fail breastfeeding babies by Dr. Bobby Ghaheri for a more in-depth dive into this important topic. 

Two other missed problems contributing to our breastfeeding issues

1. Breast pump flange size & properly using pump settings 

During her visit, Meredith also fitted Susan for properly sized flanges for her breast pump. Turns out, Susan was using flanges that were way too large, which was limiting the amount of milk she could pump and hurting her breasts. This was in turn contributing to her low milk production since her body wasn’t getting the proper signals to increase milk supply. 

As a lactation consultant quoted by Legendairy Milk says: 

“90% of my clients need 19-22mm flanges. 7% of my clients, 17mm flanges. Only 1% need 27mm or larger and 1% need 15mm. Virtually every client I see has been told they need a size larger than they actually need.”  

Susan’s breast pump (as with most breast pumps) came with 24 and 28mm flanges, which only fit a very small percentage of women. She ended up getting smaller Pumpinpals silicone flanges

If you’re a mom who’s not sure whether you’re using the right size flange, you may want to strongly consider getting a flange sizing consult

On Feb 28, Susan proudly showed me the results of her 6:00 am pumping session: 5 ounces. Considering she was struggling to pump 0.5 ounces when she started, this was a monumental achievement. Having properly sized flanges plus pumping twice during the night drastically improved her milk supply.

On Feb 28, Susan proudly showed me the results of her 5:30 am pumping session: 5 ounces. Considering she was struggling to pump 0.5 ounces when she started, this was a monumental achievement. Having properly sized flanges plus pumping twice during the night drastically improved her milk supply.

Oddly, Spectra’s breast pumps don’t come with great instructions for how to properly use them. Thus, Susan (and other moms we know with Spectras) were using them wrong.

Then Susan found these extremely helpful, easy-to-follow instructions on Legendairy Mamas’ Instagram page and had an ah-ha moment.

Also helpful via Susan: “Don’t skip the middle of the night pumps or feeds. Those milk removals help set the amount your body needs to produce during the day. I used to do 2 (2:30 AM & 5:30AM), but was able to drop to the 2:30AM with no supply impact after about 3 weeks.” Night feeds can also be the largest for a 24hr period and make up to 20% of baby’s total milk intake.

2. Bottles/nipples not designed for breastfeeding babies

The bottle our pediatrician’s lactation consultant recommended had a nipple shape that wasn’t ideal for moms who want to continue to breastfeed because it wasn’t shaped like an actual human nipple. This meant when Susan tried to breastfeed Sebastian, he would try to feed like he was on the bottle, which caused her a lot of nipple pain.

Picking the right nipple shape for our bottles wasn't as simple as we initially thought...

Picking the right nipple shape for our bottles wasn’t as simple as we initially thought…

We finally settled on Joovy Boob bottles with Joovy Boob Naturally Nood Size 0 nipples

How we treated our baby’s tongue-tie (ankyloglossia)

Meredith helped us determine a corrective course of action intended to get us to our goal of having Sebastian be an exclusively breastfed baby. That goal seemed almost impossibly unrealistic in early February given that Sebastian was getting the majority of his ~26 ounces of milk per day from formula and was almost exclusively bottle fed at that point. (Even “protesting” the nipple with screaming and crying to try to get a bottle.) 

The plan to help us correct Sebastian’s tongue-tie was as follows: 

Step 1. Get a frenectomy 

We scheduled an appointment with a dentist who specializes in frenectomies for babies, Dr. Ann Bynum at TOT SPOT Tongue Tie Center in Greenville, SC. (She came highly recommended by Meredith.) Frenectomies are a minor surgical procedure wherein a specialized laser is used to quickly remove the parts of the frenulum and other tissue causing the tongue- and lip-tie. 

Dr. Bynum told us she’s so fed up with the non and misdiagnosis of tongue-ties by other doctors and nurses in our community, that she’s intending to devote a significant part of her time over the coming years doing educational outreach to improve the problem.  

Prior to the frenectomy, Meredith and Dr. Bynum recommended that Sebastian see a pediatric chiropractor, Dr. Dreckman of Dreckman Family Chiropractic. Why?

Due to his tongue-tie, Sebastian was having to work incredibly hard to eat, overcompensating with certain muscles and tensing up throughout each feeding. The point of the pediatric chiropractor visits was to help ease some of that tension and loosen the neck muscles, helping to make the frenectomy and recovery easier for Sebastian. Dr. Dreckman gently massaged certain points along the interconnected muscles in Sebastian’s neck and jaw region during our visits, and Sebastian seemed (anecdotally) much more relaxed after his sessions with Dr. Dreckman. 

Sebastian continued to see Dr. Dreckman for about a month following the procedure. After each session, we noticed an improvement in his nursing abilities. 

It should be noted here that a good lactation consultant / IBCLC like Meredith will have other trusted medical experts in their network, so you won’t have to go figure all of this out on your own. 

How long does a frenectomy take? 

On February 13th, the ninth week of Sebastian’s life, he had his frenectomy.  

We were pretty anxious going into the procedure. We hated the idea of him experiencing pain (even if mild), but recognized the procedure as necessary for his immediate wellbeing as well as the prevention of long-term problems down the road.   

How long did Sebastian’s tongue- and lip-tie removal take? A little under 40 seconds! Yes, Dr. Bynum has a bit of experience under her belt.

Sebastian laying on Susan's lap for his frenectomy - a procedure to remove his tongue-tie and lip-tie. His eyes are closed because of the bright lights, not because he is sedated. Dr. Bynum's dentist office is decorated like a fun beach resort and the staff doesn't wear clinical gear (she's wearing some stylish torn jeans in this photo). This environment helps older kids feel more comfortable there.

Sebastian laying on Susan’s lap for his frenectomy. His eyes are closed because of the bright lights, not because he is sedated. Dr. Bynum’s dentist office is decorated like a fun beach resort and the staff doesn’t wear clinical gear (she’s wearing some stylish torn jeans in this photo). This environment helps older kids feel more comfortable there.

Some moms notice an improvement in their baby’s feeding abilities immediately after a frenectomy, but that shouldn’t be the expectation going in. Noticeable improvements for us didn’t start until 10-14 days later. 

Step 2. Mouth stretches & rehab 

If a frenulum is simply lasered off or clipped, it will soon grow back and the tongue-tie will return (same with lip-ties). That’s one of the main reasons why frenectomies are necessary — but typically not sufficient on their own — to effectively treat a tongue-tie to the point a baby can breastfeed normally. 

Meredith taught us several tongue stretching and strengthening exercises to do with Sebastian 5+ times per day for at least six weeks starting immediately after his frenectomy. These exercises were intended to prevent the removed tissue from growing back and to help Sebastian develop muscles he previously hadn’t been able to use during feeding.  

One stretch was to stand over the top of Sebastian while using both index fingers to lift his tongue up towards the roof of his mouth, holding it for about 6 seconds. The second stretch was to lift Sebastian’s top lip back and hold it for about 6 seconds. The third (more of an exercise) encouraged him to move his tongue laterally in response to our finger placement in either side of his mouth. 

She also recommended:

Sebastian enduring another tummy time session. Tummy time has never been his favorite thing, but we all suffer through.

Sebastian enduring another tummy time session. Tummy time has never been his favorite thing, but we all suffer through. Tummy time is also helpful for tongue-tie recovery.

We diligently performed these stretches/exercises daily to increase our likelihood of success. 

Step 3. Transition back to breastfeeding. 

We all want silver bullets and miracle pills, but most things in life require hard work and dedication. We never expected Sebastian’s frenectomy to make him into an exclusively breastfed baby overnight. While that does happen for a lucky few, Meredith gave us realistic expectations up front that full functional recovery could potentially take 6-8 weeks. We set our expectations accordingly.  

Here’s the naked truth: the full transition to where we are today (exclusively breastfeeding) took about 8 weeks and many of those days and weeks were absolutely miserable. The experience was exhausting and emotionally turbulent for our whole family — but absolutely worth it.  

Sebastian not only had to learn how to use his mouth for the first time (physical), but he also had to re-associate the idea that breast = food (mental). When your brain and body are only a few months old, that’s easier said than done. 

At the same time, Susan had to carefully maintain her milk supply while slowly replacing pumping with breastfeeding. Compounding the challenge: being too tired and stressed can decrease milk production, but it’s virtually impossible not to be too tired and stressed under the circumstances. 

Partners play a critical role. I had to be there to support Sebastian and Susan however I needed to. Sometimes, this meant pace feeding Sebastian while Susan pumped. Sometimes it meant trying to snap her out of a sobbing spell when things were going off the rails. And I pretty well took over all cooking and cleaning duties so Susan could have less to worry about. (I like to cook, so that part truly wasn’t much of a sacrifice.) 

Sebastian and dad enjoying a shared nibbling of Sophie the Giraffe's legs.

Sebastian and dad enjoying a shared nibbling of Sophie the Giraffe‘s legs.

If you happen to be in this stage of trying to salvage your breastfeeding, you and your family should know that the slow steady trajectory upwards towards success (the trendline) isn’t always apparent when you’re in the thick of it. There are peaks and valleys.

During the peaks, you feel like you’ve finally reached success and things are great. Then over the next few days, your baby has a regression and things feel hopeless. This is where you really need to support each other and remind yourself that it’s a temporary setback and things will improve if you stick with it. 

I half-jokingly started measuring our success based on the number of times Susan cried during a given week and the length of time between those crying sessions. (For the record, it’s been 46 days between the publish date of this article and Susan’s last cry.)

Meredith also provided a huge emotional support for Susan throughout this process by availing herself to text messages whenever there was a question or need of reassurance from an actual medical professional (no, Dr. Husband doesn’t count). 

Finally, on April 14, 2020, we reached a point of sustained success such that Meredith declared that we’d officially “graduated” from her program. Sebastian was now fully transitioned to breastfeeding. (He does still sometimes get a bottle of breastmilk at night so Susan can take a break.) 

We made it! 

Sebastian smiling and (sitting up!) post-graduation.

Sebastian smiling and (sitting up!) post-graduation.

Gratitude 

We’re forever grateful for the medical professionals in our community who helped us identify and overcome the problems of our tongue-tied and lip-tied baby:

  • Meredith Wentzel 
  • Dr. Jared J. Dreckman  
  • Dr. Ann Bynum

We recognize that we’re only one family, but our story is far from unique. Countless babies and families suffer the emotional and physical toll that comes from what seems to be a chronic, ongoing under-diagnosis of tongue-tied babies. 

We hope the information in this article not only helps other families overcome their own tongue-ties, but also helps more medical professionals realize that tongue-ties (and TOTS in general) are a real and treatable medical condition preventing many babies from being able to successfully breastfeed.      

Susan applying one of the 5,000 daily kisses to Sebastian's head.

Susan applying one of the 5,000 daily kisses to Sebastian’s head. How we overcame a tongue-tie and lip-tie in our baby.

It turns out this momma can in fact make enough milk!   


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