Long Way to a Lip Tie Diagnosis: How breastfeeding went from awful to awesome

Introduction.  Here’s the beginning and end.  Beginning: nursing Calvin was painful and emotionally fraught for the first 6 months of his life.  I was surprised to make it that far and certainly couldn’t have possibly imagined that he’d still be nursing at 16 months.  Which he is.  Blissfully.  Much to the utter surprise of me a year ago.  Thanks to getting the lip tie fixed that his pediatrician didn’t believe he had.

Here’s what I wrote when he was just shy of 3 months old:

Crying Over Spilled Milk.  If you don't want to re-read it, just know that breastfeeding was awful, so I pumped after every feeding for three months, and I got mastitis, which caused a severe dent in my hard-earned milk supply and a full-blown emotional breakdown.  There.

In a turn that seemed like a miracle, my milk supply came back in full force just a few days after I healed from mastitis.  I didn’t realize then, nor did I realize for the next few months, that my supply had stabilized pretty well by that point.  I didn’t realize then that the problem wasn’t my body, so I spent the next couple of months continuing to agonize over the length between feedings to keep up my supply.  But I had enough for him, at last.

OK, that’s fine, but what about getting him to nurse instead of drinking from a bottle?  I’d seriously had it with pumping while I was caring for him at the same time, so I figured out a way to get him to latch.  I’d tempt him back to the breast by taking the edge off his hunger craze with an ounce from the bottle, and then I would hold him close with lots of skin on skin, lightly bouncing him until he would eventually want to nurse.  I’m not going to say it was a pleasant experience, but it worked.  Finally, he would latch, finally he would eat, and steadily, he gained weight.  After a few weeks, I no longer needed to take the edge off with the bottle.  He consented to nurse if we were in a quiet environment.  So we didn’t go too far.  The thing is, he’d eat and sleep at the same time.  Like, for HOURS. 

Certain times of days were better than others.  Like nighttime…  Yes, this boy got really used to eating while he slept.  We got into a rhythm.  He’d nurse to sleep, and then he’d keep nursing for a couple hours until he was done sleeping and eating at the same time.  Then he’d be awake for a couple hours.  Rinse and repeat.  24-7.  Nighttime became a co-sleeping sleep and eat fest, where he’d wake up every hour or so, nurse, and go back to sleep.  It was kind of like hell, except that he was gaining weight and I was getting more sleep than I’d get if I were putting him back in his crib.   And I loved snuggling him.  And this is how he ate.  So I kept going, all the while wondering just how long I could keep this schedule up, knowing that, yes, my supply was now OK as long as I was around him all the time, but I still had pain in my breasts all the time.  And that can’t be good. 

Looking back on it, I have to wonder: was I completely insane?  Had I lost my mind?  What on earth compelled me to keep going with this even though his latch was awful and the constant pain I was in (not to mention the sleep deprivation)? I have two answers:

The first answer is that I was unbelievably emotionally connected to nursing Calvin.  I don’t know why.  I didn’t have any friggin’ idea how important breastfeeding was to me before I birthed him.  I did no research on breastfeeding whatsoever.  I wasn’t particularly intellectually invested in it – I’d just always seen myself as breastfeeding, and I think that’s a more compelling connection than an intellectual one. 

The second answer is that my husband didn’t have much success getting him to drink from a bottle everything that I had pumped while I was away at my internships.  Calvin would eat an ounce or two, and then, on no uncertain terms, push the bottle away.  It was confounding and puzzling, especially from a baby who had so often refused the breast in favor of the bottle.  Oh, he’d be hungry again in another hour or so, but he just wouldn’t eat very much at a time. 

So I kept going, though the repeat diagnoses of nipple thrush and continual pain, knowing that it was fulfilling my emotional needs and getting him fed despite my crazy lack of sleep.  Another point for carrying on this way was the knowledge that for however much nursing might have hurt, the pump hurt more, and my supply was always negatively affected by a week of pumping during the day.  Fridays were by far my least productive day pumping.  By Monday after I’d been around Calvin all weekend, my breasts and my supply were both in better shape.  So I carried on.  

All this time, I was religious in my dairy avoidance because of his acid reflux (note: I don’t eat much dairy anyway, but yogurt is a relatively regular part of my diet).  It seemed to help a little, but not much.  He still needed his twice daily dose of baby zantac, and even still, he’d have spit-up that smelled like bad heartburn.

It shouldn't be a big surprise that this all started to feel truly ludicrous.  When Calvin was around 6 months old, the whole thing felt like too much.  Not only the nursing, but also the fact that he would only sleep while eating and vice versa.  The fact that the baby zantac did’t get rid of the acid reflux altogether like it should have.  The fact that he would wake up 7 times in one night to eat.  The fact that he still only ate an ounce or two from the bottle while other people’s kids were eating several.  The fact that he was only getting further away from sleeping through the night, not closer to it.  Not to mention that breastfeeding was still painful and took such a long time even though he was a lot bigger and should have been more efficient by this point.  It just all seemed wrong. 

So I did what any mother whose child is not functioning properly would do this day in age: I took it to the internets.  I asked other moms about it.  It started with questions about sleep.  Other mothers sensibly recommended getting the dad to help night wean or comfort at night.  But, of course, I countered that I worried Calvin wouldn’t get enough to eat if we nightweaned since that’s when he did the bulk of his eating because he sleeps at the same time as eating, and…  I mentioned my concern, which led to me explaining the rest of the horrors. 

…which got a few moms’ attention.  The general response to my problem was, “WOW… that sounds like my experience before we got our child’s tongue tie / lip tie fixed.”  Huh?  I’d seen 7 lactation consultants and 3 pediatricians and not one of them had mentioned him having either one of those.  And yet… their stories sounded like mine.  I listened more, but I was sort of in denial – I mean, how could I have seen that many professionals with none of them noticing?  Again, the Mom’s board resounded, “Yeah…. That’s extremely common.  People don’t check for it because they either don’t know or they don’t believe they can pose problems.  Find someone who will help you.  Advocate for yourself and your child.”  It was a hard pill to swallow.  But then I looked at the links of pictures from articles they were sending me.  And yes, Calvin had quite a lip tie.  Or at least, it looked it to my untrained eye.  And no, none of the professionals I’d seen had diagnosed him.  I didn’t know what to do. 

Around the same time, one of my best friends had a baby, who, incidentally, had no troubles breastfeeding whatsoever.  At one point, the newborn smelled the milk on me and attempted to nurse.  I noticed her upper lip curled out in a way that Calvin’s never had.  Calvin’s upper lip always curled under and in, preventing him from getting a good suction.  I’d attempt to flange his lip out to fix it, but it would pop right back under.  My friend’s newborn’s lips just did it on their own and had none of the problems Calvin had. 

So what to do now that I thought Calvin had a lip tie?  I felt like I needed a diagnosis from someone who had seen these before.  One wonderful mother on a Mom’s Facebook group found an IBCLC (Institution Board Certified Lactation Consultant) in my neck of the woods who didn’t think tongue ties and lip ties were unfounded myths.  I really have to thank her a million times for the rest of eternity because I’d already seen so many people who hadn’t correctly diagnosed Calvin’s lip and tongue tie that I had no idea how to find someone who could or would in this area.  Thanks to a friend of a friend, Terry Anthony, an IBCLC, came over one day late August, took one look in his mouth and said, “oh yeah, that’s quite a lip tie.  Yeah, he has a posterior tongue tie, too.  Can I see in your mouth, out of curiosity? … yup.  You’ve got the same thing.  These tend to run in the family.”  Whhaaaaa?…. So that explains why my mom had all these problems breastfeeding me!  My mom always told me that she got “cauliflower nipples” with me – a visually evocative description of vasospasms, common to mothers breastfeeding a kid with a tie.  It was like a big light went on, and everything started to make sense.   I  have all the lifelong complications of untreated ties.  The jaw pain, acid reflux, the malformed jaw that narrowed in my attempts to establish a suction, and chronic oral health issues.  I even needed to get a palate expander before my adult teeth came in because there wasn’t room in my jaw for all my teeth.  It’s highly likely that is all related to my untreated ties.  I didn’t want Calvin to have those problems.

The next question was a question of what to do.  Terry was honest with me that getting tongue ties and lip ties fixed when they’re 6 months old is usually helpful for breastfeeding, but not 100% of the time due to the fact that it can be hard for them to change their muscular nursing patterns at that age.  At the least, it would probably take more time to improve than it would a newborn.  But, she said, it often does help. 

What convinced me was all of the other longterm consequences of untreated ties.  They don’t only have a negative impact on breastfeeding, but they also frequently lead to lifelong digestive issues (such as acid reflux) and dental problems as well as occasional speech problems through the malformation of the jawbones that occurs when the babies are working so hard to establish a suction on either a breast or a bottle.  Knowing that I have those very problems galvanized my determination to get his corrected.  I figured that even if it didn’t help breastfeeding at this stage in the game, at least I could hopefully prevent some of the chronic illness that I’ve had to deal with because nobody ever caught my lip tie. 

From my consultations with the scholarly literature, I concluded thus: tongue ties and lip ties don’t always lead to problems (breastfeeding problems and/or chronic digestive and dental issues).  But if breastfeeding is problematic and your kid has a tie, it’s most likely going to translate to lifelong problems, so it’s worth getting it fixed even if you’re not breastfeeding anymore.  Or at least, it was for me and Calvin. 

Armed with information, I called the world expert in Albany, Dr. Kotlow, to see if he could recommend someone in my area who is any good at fixing ties.  He could.  Dr. Martin Kaplan at Kid Care Dental in Stoughton, whom Dr. Kotlow personally trained himself.  They use lasers, which are able to remove more of the excessive frenulum than scissors can, which seems to related to a lower risk for re-attachment.  That sounded good to me.  I called Dr. Kaplan’s office and made an appointment for a consultation. 

In hindsight, this all sounds so reasonable, but I assure you that it’s a terrifying process to go through, especially knowing that it’s a re-emergent field of medicine and there aren’t very many people who even believe that ties are a problem.  But I was pretty sure this would help, so I moved forward.  The day of the consultation, Dr. Kaplan looked in my son's mouth and went, “oh yeah, that’s a good one.  Do you want to have it fixed?  If so, I’ll push back my next appointment and fix it right now.  This is a quality of life issue.”  After a moment or two of feeling completely overwhelmed, I consented. 

His bedside manner was wonderful.  He showed me pictures of previous revisions he’d done, and assured me that he has seen none that have re-attached.  That made me feel better.  He also gave me the choice of staying in the room while it was done.  I couldn’t do it.  I couldn’t watch my baby get held down while a laser was in his mouth.  But Dr. Kaplan explained to me what would happen: that he would use a topical, localized anesthetic rather than general anesthesia, that it would take less than a minute do actually do the procedure, and that he’d carry Calvin right out to me afterwards so he could breastfeed immediately, which helps babies feel better and relearn how to breastfeed.  Well, that’s what happened. It was terrifying.

Just as Dr. Kaplan said, Calvin nursed immediately after the procedure.  It wasn’t the easiest nursing we’d ever done given his recent trauma and the fact that his upper lip was numb, but it was the best latch he’d ever had.  I noticed that immediately.  Dr. Kaplan explained to me the aftercare; I would need to gently stretch the site of the correction using vitamin E oil or olive oil three times a day for two weeks.  He sent me on my way, and Calvin and I went home to nurse some more. 

Before moving on, I want to address the fact that I chose not to have his posterior tongue tie treated.  Dr. Kaplan thought that Calvin had excellent tongue mobility and that it wasn’t worth fixing it if the lip tie took care of the problems.  He told me that if nursing, Calvin’s acid reflux, etc. weren’t all better in three weeks, then I should call him back and he’d fix the posterior tongue tie.  That seemed reasonable to me.  As you might have guessed by this point, we did not need that done because, as Dr. Kaplan suspected, everything was better within three weeks. 

No seriously, everything. 

Though Calvin’s latch was immediately better, it wasn’t all sunshine and roses during his recovery.  Not only did he get his first teeth, but he also needed to relearn how to nurse.  He was a little clumsy with it for the next couple of days, which frustrated him.  But I also had to relearn how to nurse and learn how to trust my baby when he said he wasn’t hungry.  The fact is that this correction transformed his ability to remove milk from the breast, and he went from taking an hour to drink an ounce to taking 10 minutes to drink three or four ounces.  I’d get so upset when he refused the breast because, for the previous few months, it was because of a bottle preference.  But now it was because he truly wasn’t hungry because he was better at eating!  He continued to gain weight beautifully, nursing every 2-4 hours as he desired.  So I needed to learn to stop offering to him every 45 minutes.  He had other things to do. 

And within three weeks, everything was better.  No, really – everything.  Fixing the lip tie changed every aspect of parenthood with this child.  The latch was better immediately, which means that the pain during and between feedings went away.  It also means that his acid reflux went away as soon as that little flap of excess skin was gone.  No more baby zantac!  And the fact that he could go longer between feedings revolutionized life in general.  He no longer woke up every 45 minutes at night; it was every few hours instead.  I was SLEEPING MORE.  I felt like a new person!  Not to mention that we could leave the house and go about daily life without nursing every hour.  Car trips were suddenly a hell of a lot easier.  And from there, life turned into something kind of like maternal bliss.  He preferred breast over bottle (though he still took it at daycare if he was hungry), and I didn’t have to pump as often because he wasn’t feeding as often anymore.  I could go back to eating the small amount of dairy I dare to eat (yogurt) without fear that it would irritate my baby’s acid reflux.  I felt like I was supposed to feel when breastfeeding went well.  Like a human being.  And I was finally enjoying motherhood.  

And what about Calvin?  He was a much happier kid.  Wouldn’t you be if you suddenly were able to eat a whole meal instead of just bites and you weren’t hungry all the time?  Wouldn’t you be if you were able to sleep longer?  Wouldn’t you be if your acid reflux went away?  Meanwhile, he loved nursing.  As he was simultaneously approaching mobility, he had fun getting to decide when he felt like nursing and initiating it himself. 

Getting his lip tie fixed transformed our lives.  So why is it that I went 6 months before anyone caught this abominable thing?  Most professionals aren’t skilled in diagnosing tongue tie and lip tie, and some haven’t even heard of the latter.  Lip ties are even less frequently identified than tongue tie.  To quote some hearsay, some attribute the lack of knowledge to an overdiagnosis in the 70s, which led to a bit of a backlash against diagnosing it.  So now, even some trained IBCLCs are under a certain amount of academic pressure not to diagnose them even if they see them.  But probably the biggest factor is that the knowledge of how to do it properly has passed out of common practice due to bottle feeding and a change in birthing practices.  In the early twentieth century, bottle feeding became the norm at the same time that midwives were being replaced by physicians.  There’s an old joke that midwives kept one fingernail sharp to clip ties shortly after birth if breastfeeding wasn’t going well.  But between their replacement and the discontinuation of breastfeeding as a cultural norm, the knowledge passed out of our cultural expertise. 

The result is that even though there might be a certain level of knowledge about it, many people still don’t really believe that it’s a potential real problem.  One physician looked me square in the eye and said, “I don’t believe in tongue ties.”  I went and found a new pediatrician.  It’s totally possible for a frazzled mother at her wit’s end to visit several physicians, midwives, and IBCLCs and still not have any clear answers.  In the face of THAT, I’d recommend she check out the Tongue Tie Group on Facebook and otherwise prepare herself to do an informal diagnosis if she suspects something is amiss http://www.mommypotamus.com/how-to-diagnose-tongue-and-lip-ties/.  But if she doesn’t know about those resources, she's screwed.  So once I got over the shame and emotional trauma of the horrors of it all, I got vocal.  I’ve been telling every new mother I can.  Who knows who I’ll help just by sharing my experience? 

I look back on the first six months of Calvin’s life, and I have to wonder: how much of this would have been totally different if it weren’t for the tie?  I mean, he was a fussy, difficult, colicky baby who always had reflux, wouldn’t really sleep, and couldn’t really eat.  How different would have disposition have been?  Might he have slept better?  I really think so.  I also have to wonder: how many other mothers and babies have gone through this, are going through it, and will go through it?  How many mothers stopped nursing because they were having an awful experience with it that can be traced back to undiagnosed ties? 

Since I made my short post about how breastfeeding improved, I have received a staggering number of private messages, emails, and a couple of phone calls from women experiencing the same thing, and that’s only the ones who decided to contact me.  So I know it’s not as rare as people think.  I’ve heard numbers bandied about like “this only affects 2% of the population.”  Well, if I already know 100 women whose kids were born with a tie in Massachusetts and upstate New York without even trying, it must be more prevalent than that.  I definitely don't know 2% of the population.  I think it’s time people know more about it.

Further reading:

Norma Ritter, IBCLC  https://breastfeedingusa.org/content/article/tell-me-about-tongue-ties. 

Dr. Kotlow’s website http://www.kiddsteeth.com/articles.html