Tongue-Tied and All the Rest
How We Discovered and Overcame Our Baby's Tongue, Lip, and Cheek Ties (Tethered Oral Ties)
Today I want to share with you a detailed account of our experience identifying, correcting, and recovering from Tethered Oral Ties with my second baby. When I was going through this, I was fortunate enough to have access to amazing providers who provided our family not just medical care but also education and empowerment. Not only was it challenging to find first-hand accounts online of what I could expect, I’ve also discovered that most moms don’t have such helpful providers. Often, they seem to notice the same things I did and are essentially told to suck it up and wait it out, or switch to bottles. I hope if you or someone you know is struggling with infant oral ties, my story empowers you with the information and confidence to advocate for your baby and ask questions of providers that either make you feel confident in your baby’s care, or know it’s time to move on to providers who are more supportive.
Twice now I’ve had tumultuous birth experiences despite hiring homebirth midwives, attending birth classes, being a doula (both times), reading a lot of books and listening to a lot of podcasts on having physiological births. And yet, both times, I have had to transfer to the hospital in labor for completely different reasons. And for the second birth, I had to have a cesarean section. Thus, when my babies were born I had a death grip on breastfeeding. It had to work. If I couldn’t give my babies a physiological and euphoric birth, I would at least feed them from my own body.
With my oldest, this mostly worked. I had a strong let down and she had a lot of reflux and gas, but she loved to nurse and fell asleep at the breast all the time. We always commented on her huge alligator belly and how she often seemed “milk drunk". This all seemed normal. The only stumbling block we had with her was her sleep. She napped well enough, but when it came time to go to bed for the night we would endure hours of screaming. Even when she was a newborn, my husband had to bounce her vigorously on the pregnancy ball until she calmed. We thought it was just the “witching hour”: an unexplained newborn phenomenon that many people just endure. Except it never went away for her. As she got older, it started happening in the middle of the night too. We would take turns walking her all over the neighborhood while the moon loomed high in the sky. The fresh night air would seem to help, but when we brought her back to bed, the screaming started all over again. She slept great if she was on our chest or in a carrier, or in other very specific positions that only my husband could endure. Her pediatrician had nothing to say about it. I got pregnant with my second when my oldest was just 7 months old. By the time she was 9 months old, my supply dwindled to just a few ounces a day. She began eating three meals every day, and I began combo feeding formula. So many tears were shed. We breastfed for the last time on the morning of her first birthday. She nursed for a full 30 minutes, and then never again. I remember that moment so, so tenderly. Knowing what I know now, I think she also had oral ties and if we could have addressed them with either body work or a revision, things could have been different in that first year and a half of her life.
After I had the cesarean, it took five days for my milk to come in. (Two days later than with my vaginal birth) Fortunately, I was prepared. Colostrum is still milk, and it’s very nutrient-dense. It’s incredibly hard to pump so some moms think they are not producing at all, when in reality they are producing exactly enough for their brand new baby’s little grape sized stomach — and because their stomach is so small, that’s why they need to eat every few hours! I comfortably nursed around the clock, and by the time we left the hospital my baby had maintained her birth weight.1
As most seasoned moms know (and many new moms don’t): newborns clusterfeed. Clusterfeeding is when a baby wants to nurse frequently for typically 12-48 hours. Sometimes it seems they only want to take 15-30 minute rests in between nursing sessions. Clusterfeeding sessions are essential for building mom’s milk supply — when a baby clusterfeeds, they are telling the mom’s body how much milk to make and when. When these phases start the best thing to do is surrender all expectations of getting anything done besides sitting somewhere comfortable with your baby and enjoy binge-watching a good TV show.
Clusterfeeding was one of the first signs that something was amiss with my second child’s breastfeeding experience. The clusterfeeding wasn’t nearly as intense as it was with my first. My second seemed more sleepy, and cluster feeding looked like nursing only every 1 to 2 hours, and for not very long. She also didn’t seem to fall asleep at the breast like my first. At first I wrote off her sleepiness figuring she was recovering from such a tulmultous birth and the cesarean medications. But the issue persisted well beyond the first two weeks.
The weeks went on and I began to feel that my second child did not enjoy nursing as she should. With my first child, at the first sign of any discomfort I could put her on the breast and she would immediately settle and usually fall asleep totally “milk drunk”. You’re cold? Let’s nurse. You’re tired? Let’s nurse. You have a diaper rash? Let’s nurse. Like magic, it comforted her every time. But my second child… nursing did not seem to be a source of comfort. She rarely fell asleep at the breast, and I often felt like she ended the nursing session before she was truly satiated. At around four weeks old I could tell she was hungry. I put her to the breast, and she suckled limply, as if she had no energy. My mother instincts started flashing red. It had been long enough since she last nursed that she should be quite hungry, and yet her latch was weak. I got out my hand pump, a baby medicine syringe, and I went to work pumping a few ounces, filling the syringe, and syringe feeding my baby until she perked up again, ready to nurse at the breast. Now I knew for sure that this wasn’t a difference in personality or temperament. It wasn’t that my supply was more robust as a second time mom and my baby didn’t have to work hard to get what she needed. There was something wrong.
Because nursing did not hurt at all, I honestly thought ties were out of the question. I experienced no cracking or bleeding or pinching. The milk flowed easily, and often so much that my daughter seemed to choke on it. I did, however, hear clicking when she nursed, and I felt her seal was not strong. In fact, I felt there was no seal at all and instead of sucking the milk out it felt like she was chewing at my breast to force it out. Every nursing session was messy as she seemed to just let milk fall out of her mouth. I figured these things would improve with time and patience. I somewhat reluctantly called the most reputable IBCLC practice in my area, mostly to make sure I covered my bases. I figured I would go in for one appointment and there would just be some essential piece of information I forgot about newborn nursing, like maybe about position or the like, they would correct me, and I would be on my merry way. How it all played out was quite different.
As a whole family, we walked into an office with warm earth tones and low lights. We were greeted by a friendly voice, and led into a room with a changing table, warm ambient lighting, and various burp clothes and muslins of many pleasing colors. I explained the things I had noticed to the soft-spoken IBCLC and she listened attentively and patiently. She suggested we weigh my baby, just to see where she was at. I was surprised to learn that based on her current weight, it seemed she was gaining weight at a decreasing rate. Born at a whopping 9 lbs 2 oz, she still seemed plenty chunky to me, but the math was undeniable. Next, the IBCLC asked to watch us nurse and do a weighted feed. She heard the clicking and even put her finger between my baby’s mouth and my breast to test the seal, which was non-existent. She witnessed as the session ended with the typical choking sounds. The weighted feed revealed that our baby was transferring very little milk, especially for how long she nursed — indicating she was expending more energy nursing than she was taking in.
Next, the IBCLC asked if she could hold my baby and look in her mouth. I consented and watched as the IBCLC cooed and sang while she manipulated different parts of my baby’s mouth. She put her finger at the roof of my baby’s mouth to test the strength of her suckle and the presence of her suckle reflex, she put her finger on each side of my baby’s mouth to see if and how far her tongue would follow, and she stretched various tissues and muscles to test function.
Finally, the IBCLC handed my baby back to me. She asked if we had experienced anything else unusual. Suddenly, my husband and I both had a lot to say. We explained that every bowel movement sounded explosive in both sound and spread, and she always strained with them even if they were a normal size. She also had what we called an “alligator” belly, and the spit up felt constant to the point where we wondered how much milk she was really keeping down. These symptoms we had chalked up to a weak microbiome due to her not passing through the vaginal canal.
We waited with baited breath for the IBCLC to tell us this was all normal and we just had to gather some fortitude and realize some babies are harder than others. Fortunately that was not what happened. The IBCLC explained that our baby had significant tongue, lip, and cheek ties. She then went on to explain all the tests she did, what she would expect to see in a baby with normal function, and what our baby did instead. Our baby’s mouth was so restricted that she had to work much harder than a baby without ties to nurse, and thus nursing was tiring and frustrating for her. And because the muscles were so restricted, she couldn’t get a good seal on my breast, which caused excess air to enter her stomach causing increased gas and for a lot of my breast milk to simply spill out of her mouth and on to me before it even made it into her stomach.
With such significant restrictions, the IBCLC advised that a surgical revision was likely to significantly improve our nursing relationship. However, because our baby was gaining weight so slowly and she was so weak, the IBCLC said that she was less likely to respond to the revision well. She said it was important that we help her become more strong and robust before pursuing a revision. There were a few ways we could do that. We could supplement with a bottle of breastmilk or formula each day, or we could pursue body work and nurse more frequently. She advised us that ties are ultimately a muscle tension problem, the mouth muscles run all the way down the spine which is part of how oral ties can cause problems with digestion and overall mobility. Not everyone with a visible tie will have issues with function, and you cannot ascertain the severity of a tie just by looking at it. She recommended we pursue treatment with a Webster certified chiropractor or Cranial Sacral Therapy. I had already recently established a relationship with a webster chiropractor because I had debilitating Pubis Symphysis Disfunction in pregnancy, so that is the route we chose.
I believe we took our baby twice to the chiropractor that week. She held my baby tenderly, looked in her in the eyes, while she gently adjusted her. When chiropractors adjust babies, there should be no cracking or popping. They feel along the baby’s spine and neck for areas of tension, and release the tension with gentle pressure and other techniques I frankly don’t understand. After our second visit, I noticed our breastfeeding sessions were more relaxed. My baby’s seal didn’t improve, but she was willing to nurse more frequently, and so I offered at least every two hours. After nursing, I held her upright to help her digest as much milk as possible without spitting it up. I fed her while in the carrier as the upright position seemed to help significantly with her fatigue and to prevent spitting up. I also noticed after chiropractic adjustments that my baby’s bowel movements were less cinematic and seemed less painful for her.
One week after our initial IBCLC visit, we came back for our follow up. I explained to the IBCLC that while the quality of the nursing wasn’t improving, we were able to do it more frequently and my baby seemed happier and less fussy. Even if all the symptoms were still there, it helped me a lot that my baby was coping better. We did another weighted feed and our baby had gained more weight since the previous week even though she was transferring about the same. The IBCLC shared that given this improvement and how our baby responded to the bodywork she believed our baby to be a good candidate for revision. She had three different providers she recommended. Two were pediatric dentists and performed the revision via a laser, and the third was an ENT and he manually cut the ties, which was considered more “old school”. It was explained to us that the laser revision typically had better long term outcomes and was less painful for babies to recover from. Upon receiving the revision we would need to return to the IBCLCs office at least twice a week for several weeks for occupational therapy. She explained that babies first learn to nurse in the womb, and when they have ties they spend all nine months or so of pregnancy practicing nursing the “wrong way”. Once the restrictions are released, they almost have to start from square one, which is why its preferable to have ties identified and corrected as early as possible.
One week from that appointment we scheduled a morning chiropractic adjustment and went straight from there to the dentist. They explained to me how the procedure would go step by step. They would spend a few seconds lasering off each tie. Immediately upon finishing they encouraged me to bring my baby directly to myself to comfort her, and I would be able to and should nurse her as soon as possible.
The room was tiny, but the dentist, a nurse, and my husband and I managed to all fit. They got everything ready, and then directed me to hold my baby down. As soon as they forced her mouth open, the screaming began. As a mother, there is nothing more horrible than watching and even aiding in causing your baby such turmoil. But the dentist worked quickly and efficiently, and I was grateful to be in a position where I could see exactly what he was doing as he lasered each tie into oblivion. Overall the procedure took maybe 15 seconds? Perhaps 30? And just as they promised I was able to cuddle my baby as soon as they finished. And as soon as she was released from being held down she stopped crying and settled, which made me wonder if it was even painful for her at all, or if she was just scared about being held down. I was lead to a quiet and cozy room to nurse her. Things did not feel too different yet, but I was relieved that she wasn’t totally averse to nursing at all.
I was directed to stretch her wounds every 4 to 6 hours. Doing these stretched would help the tissue heal in an elongated position. If I didn’t perform the stretches I was warned that the frenulums could grow back, and come back even tighter. The nurse informed me that she had a family who had to have the procedure redone three times. I couldn’t imagine. I diligently held my baby down every 4 hours during the day and night to stretch her tissues. Over time she grew used to it, and now I believe that this early exposure to fingers in her mouth has helped her be a little more amenable to teeth brushing.
On day two, we returned to the IBCLC so she could evaluate healing and begin occupational therapy. Over the next 6 weeks, nursing sometimes felt like one step forward and two steps back. At times she gained weight quickly, and other times she plateaued. Sometimes nursing felt normal, and other times it felt worse than before. However, I was told she was healing well, and it was only a matter of time before things would be “normal”. We continued seeing the chiropractor. At around 4 weeks I told the IBCLC I did not want to weigh my baby so frequently anymore. It was causing me too much stress and anxiety, and I felt she was improving at a satisfactory pace. I was already doing everything I could, and my first baby was also born in the 90th percentile for weight, and uneventfully dropped to the 40th. I was told by our pediatrician this is totally normal, especially considering my husband and I are on the shorter side. I believed my second was following the same pattern. The IBCLC said that was okay, and if there were other signs of struggle we could always return to weighing her frequently at that time.
When we saw the most improvement was actually around 6 weeks out when the IBCLC got a Cranial Sacral Therapy practitioner in the office. They offered to let me see her and run it in my insurance as a normal appointment. I was willing to try and I’m so glad I did because things were so much better even just that day. My chiropractor was great emotional and intellectful support, but if we encounter ties again I think I will prioritize CST over chiropractic based on my experience.
By 12 weeks old, I felt my baby was nursing normally and happily. She was sleeping better, having less blowouts, and her gas sounded less explosive and painful. Our home reached a kind of equilibrium and we all breathed a collective sigh of relief. We were done with stretches, we were done with exercises. We arrived at the end, and now it was time to all just be normal. This baby only had a bottle maybe 3 or 4 times in her entire first year of life. We never had to supplement with formula. We went on to exclusively breastfeed until a week or so after her first birthday, when we had to wean due to some health issues of my own. At 18 months old she still seems to remember nursing, as she likes to lift up my shirt and lay gently on my breasts when she needs extra comfort. I am very happy with how things turned out, and having revised her ties in infancy we will likely avoid issues that children with unresolved oral ties can face later in childhood like a high and narrow palette, teeth crowding, cavities, and mouth breathing.
My number one piece of advice to parents as both a mom myself and a doula is: establish a relationship with an out-of-hospital IBCLC before your baby is born, and preferably one known for being knowledgeable in ties (not all are, but lactation consultants are typically even less so). Over time, I’ve found that lactation consultants based at the hospital or at pediatrician offices are great for teaching first time moms the basics of breastfeeding, but they are unequipped to help with anything outside of normal and unlikely to refer out to other more experienced practitioners.
If at any point you feel like something is not right or harder than it should be, just ask for an IBCLC to take a look. Often there is an easy fix, but sometimes what is going on is more complex than you anticipate and your baby could use more support. Not all oral ties require surgical revision, often they are overcome with consistent body work, and a good IBCLC (or any medical provider, really) will always try the mode of least intervention first.
If you know a mother struggling with breastfeeding, please consider sharing my story with her! If you struggled with oral ties with your baby I would also love to hear in the comments what your family did to overcome it, or if you decided to exclusively pump or formula feed instead. I think those are both legitimate alternatives compared to what we did. As a second time mom, part of why I didn’t want to go those routes is because I actually find exclusive breastfeeding to be the least amount of work and therefore the least stressful for me. There are no pump parts to clean or sterilize, no formula to buy at the store, and no need to worry about how long we will be out and if there will be enough formula for the baby. I also fully lean into the power of nursing my babies to sleep all night long — I could not imagine getting out of bed in the middle of the night to make a bottle. I understand not everyone agrees, and I still think you are a good mom if you encountered a terrible latch or lackluster weight gain and said “I want to go a route that feels more intuitive and peaceful to me, and that’s exclusive pumping/formula feeding.”
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It’s also completely normal for a baby who is getting enough milk/colostrum to lose some weight in the hospital, especially if mom was on an IV in labor. My eldest lost a whole pound. I did not supplement with formula, I just nursed on demand, and she was back and above her birth weight by two weeks old. I find hospital based lactation consultants are often not giving evidenced based advice, leading many moms to supplement with formula when they don’t need to. Without the right guidance, this supplementation can be detrimental to a longterm breastfeeding relationship — why take the unnecessary risk? If you wish to breastfeed, establish a relationship with an out-of-hospital IBCLC with a good reputation before you give birth.