I had a reader ask me to discuss tongue and lip ties on the blog. Because I’m not a pediatric dentist or lactation consultant, I would rather share our story with tongue tie and how we got it revised. It’s highly important to educate yourself about the signs of tongue and lip tie prior to birth, so that you can better detect them early on. This will prevent breastfeeding, feeding, and speech complications that can lead to negative impacts on development. I knew Grace had tongue tie even though 3 doctors and 1 lactation consultant told me she didn’t. My instincts were right. Tongue and lip ties have been noted in pediatric medical literature for decades, but awareness is just starting to ramp up now on timely diagnosis and revision. Most pediatricians are not trained on their diagnosis so I highly, highly, highly suggest visiting a reputable pediatric dentist with experience in laser treatment for proper diagnosis. Ask around local mom groups – you’ll find one in your area!
Okay, If you’re a new mom or mom-to-be, you may be wondering what in the world are tongue and lip ties!? Let’s start by discussing the anatomy of our mouths. Our tongues don’t move freely within our mouth like we may think – they are actually adhered and anchored to our bottom palate by a frenulum (a folded mucous membrane). This also goes with our lips which are adhered to our top and bottom gingival ridges with their own frenulums.This is normal. We need these structures in our mouths to be anchored by these frenulums so we can better control them. They help us annunciate our words, latch on a nipple, and roll our “R”s in Spanish class. But when the attachment impedes mobility, problems can occur. I’ve worked in pediatric clinics where the speech therapists have discovered many children referred to them for speech issues actually have tongue tie. Once they have the revision at a pediatric dentist, their speech improves drastically over night and within a few weeks are discharged from therapy.
Tongue ties and lips ties are fairly easy to diagnose at birth if you have the right team of healthcare providers. A baby may have difficulty opening lifting their tongue, latching on a nipple or bottle, or using the propulsion of the tongue to bring milk or formula to the esophagus for nutrition. This was our case. Grace was born at only 5 1/2 pounds. She had very low blood glucose levels at birth and was monitored for 72 hours in the hospital. This may have been due to my 4 day labor when I could barely keep any water in my system let alone food. We weren’t able to bring her glucose levels up within the first 12 hours outside the womb because she was feeding inefficiently (which we now know was due to posterior tongue tie).
On the first day of her life, her glucose levels were so low they whisked her away for lots of testing for a couple hours. I counted the minutes until they brought her back to me. Everything came back normal but she wasn’t receiving adequate nutrition via breastfeeding (keeping her glucose low) even though she looked like she was latching. The nurse told me she needed formula and she needed it fast since she wasn’t waking up (low glucose results in sleepiness). I felt incredibly hopeless, sad, angry, and frustrated when she told me that. I told her to go away, I wasn’t feeding my baby soy formula, and I’ll figure it out. But I couldn’t. Nothing I was trying was working and the lactation consultant was too busy to come see me. Side note: I had told a female friend who has 2 kids I wanted to bring homemade formula to the hospital just in case something happened and Grace couldn’t receive breastmilk. She looked at me with such disgust for even suggesting that, I felt ashamed. My instincts told me I should have had a back up, and I didn’t listen to them.
I’m not saying everyone needs a breastfeeding back-up plan, but not introducing formula to my baby was so important to me, that my gut instinct told me it was better to be safe than sorry. (This is not a discussion on formula v breastmilk, by the way. I understand some babies require formula, but there are better formula options than the crap gmo soy formula they have in the hospital. We also required a round of antibiotics so I was extremely upset at how we were “starting out” with her gut microbiome.) ALWAYS listen to your instincts. The most frustrating part was I had loads of colostrum – the nurses were all coming in to see all the colostrum I had been pumping! They were fascinated! But I had barely seen my baby’s eyes in the 20 hours since she was born because she was so low on blood sugar and didn’t have enough energy to open them. The nurse made me feel guilty for not being able to feed her. For the second time, I let someone else tell me how I should feel and what I should do, even though it was against my maternal instinct. Since that day, I’ve never let someone else determine the choices I make as a mother, even if it means hurting someone’s feelings or disappointing them.
Before the hospital lactation consultant could get to me, the nurse fed Grace a bottle of soy formula. I wanted to crumble. I cried, I screamed, my stomach had a pit in it like I’ve never experienced. Because this woman took my baby from me and did something to her that was so against my newly maternal instinct, I could have ripped her head off her body. I had PLENTY of milk… enough for triplets, and my new baby was receiving GMO, corn-syrup soy formula as her first food. But the ILLC hadn’t had TIME to bring me a pump so I could pump colostrum and feed her through a bottle.It was 100% the most defeating moment of my life.
To this day, I am still very bothered and think there should have been another way. This wouldn’t have happened if I hadn’t delivered in a hospital and had been at a birth center. I just know it. But you can’t change the past. Thankfully, I put up such a fuss about that one bottle, they knew we had to find an alternative or they were going to have a real problem on their hands (me + my hormones).FINALLY, the lactation consultant came to see me. While she felt guilty she came too late to save Grace from soy formula, she checked on me pretty non-stop for the next 24 hours. I was hooked up to a hospital-grade pump every hour for the next 18 hours to pump as much colostrum as I could to make sure my body got the signal, “Yes there’s a baby here who needs milk, she just doesn’t know how to get it yet!” Thankfully, my milk did come in on day 4. With a vengeance. A story for later.
DAY 2 TO 3
I was also feeding Grace every hour with a Supplemental Nursing System (SNS) – we taped the little tube to my boob so Grace could simulate sucking on my nipple while really receiving my pumped colostrum from a bottle through the tube. There’s a photo of me naked in the hospital – one boob hooked up to the breast pump, Grace in football hold on my other side trying to latch, while the SNS is taped to my body and dangling over my shoulder. I was still smiling at least. During this time, Grace had to receive a glucose heel prick test every 8 hours for 48 hours. It was pure torture watching her scream, her foot bleed and have to be bandaged up 6 times in the first 2 days of her life. The doctors wouldn’t send us home until her glucose levels were normal for a full 24 hours (3 prick tests in a row).Imagine waiting to hear some really exciting or devastating news 6 times in the first 2 days of your child’s life. If she failed the test, we had to start over. That happened 3 times. Devastating. I just wanted to be home with my little girl and enjoy her, not subject her to pain and testing. We were in the hospital for 2 extra days because of this in addition to 2 days of labor (and 2 days of labor at home previous to that). We were beyond exhausted. I had accumulated a total of 10 hours of sleep in 7 days. I didn’t know that was humanly possible.
Finally on Monday night (I delivered Friday night), we got the okay to go home after she passed 3 tests in a row. All our hard work paid off and my little girl only had to receive one bottle of formula. I was nervous to go home because she still wasn’t latching super well but the lactation consultant at the hospital gave me her number and a list of other LCs that could do home visits. That night at 8pm my milk came in hard and fast. My engorgement was so painful, I vowed to never have another child. You would think a 4-day long back labor with a herniated lumbar disc would have turned me off from another pregnancy, but in that moment engorgement was unbearable. The worst part was Grace wasn’t eating well so she was unable to relieve any of the pressure. My husband and I thought my boobs were going to explode. They’re usually a B cup and were a G CUP that day – I’m not kidding! I looked like Pamela Anderson. You may be chuckling if you’re also a new mom – I was NOT expecting to have such an oversupply!
I tried cabbage leaves, warm shower and hand compression, pumping for relief, nothing was working. I called one of the ILLCs that the hospital LC gave me and left a voicemail that said, “Hi Dawn. I need you to come over to my house ASAP. It’s an emergency. My boobs are going to explode.” She arrived within 30 minutes. After showing me some tricks to relieve “the worst engorgement she has ever seen in 16 years” (an award I hope I never receive again), she also told me she thought Grace has a tongue tie. She couldn’t tell because Grace at that point could barely open her mouth because her tongue was pretty much stuck to her bottom palate. It just kind of laid flat, slightly protruding from her mouth, but with a lack of mobility.
She referred me to a pediatric dentist who was able to see me the next day at 1 pm for imaging and consultation. If they found a tongue tie, they could revise it with a laser procedure in 5 minutes on the spot. It would be $400 for the procedure. It could have cost $4,000 and I would have written them a check immediately. I so desperately wanted my girl to eat. At this point, she had been pulling on and off my breast for at least 12 hours a day and not getting much milk.
At the appointment, our very kind dentist took photos of Grace’s mouth using a small laser camera. Sure enough she had a major posterior tongue tie that was hard to see without the camera. My husband started crying when he realized she would have to get the semi-painful procedure. I didn’t cry. My instincts told me it was for the best, and I was actually excited for her to be able to use her tongue properly. My sweet little girl went into the procedure room alone while we waited in a separate room by ourselves. Even with both doors closed, we could hear her scream when they used the laser to snip her frenulum. She cried for a few minutes and they brought her straight to me and she started breastfeeding immediately. It was different already. She was gulping down milk with the tell-tale nutritional sucking movement of the jaw that my LC had showed me to look for.
DAY 6 TO 16
We were instructed to massage the area 3 times a day for 30 seconds with a clean finger for 10 days. This never bothered Grace and she didn’t cry when I did the massage. The area turned white as it healed and then eventually the whiteness went away. At the follow-up appointment, she was given the okay. Everything had healed well. She also had been breastfeeding like a champion since the procedure and finally gaining weight instead of losing!SINCE THENGrace has been an AMAZING eater since she had her tongue tie revised. She is now eating solids without issue, babbling and saying “Momma” and trying to say “Milk” (her two favorite things, let’s be real). I am very appreciative of our LC Dawn for sending us to a proficient and experienced pediatric dentist who made us feel comfortable. We submitted the bill to insurance and are waiting to hear back on whether or not they will cover it. I don’t care either way – I would have had to spend way more than $400 on formula by now if we hadn’t been successful breastfeeding.
Feeding anywhere and everywhere, including in the Whole Foods parking lot on multiple occasions those first few months!
Breastfeeding is my #1 priority in life currently. I even decided to stay at home and not go back to work until she weans because I want to protect my milk supply and our breastfeeding relationship. The benefits of breastmilk on her longterm health and immune system far outweigh any other choice I could make in this life for me or for her. This is why I’m sharing our story. I don’t want another mom to have to go through what we went through with Grace in the first week of her life. Tongue ties and lip ties are incredibly common, and not all of them are going to affect a baby’s ability to nurse or latch on a bottle, but that same tongue or lip tie may affect their ability to speak in a few years. Or it won’t. You just never know. I suggest doing your research on Tongue and Lip Ties before birth so you can look for the signs. Also have more than 1 Lactation Consultants’ contact information on hand for an emergency visit and research a local pediatric dentist that does laser tie reversal (they heal faster and are less invasive than the conventional snipping method).
My biggest advice if breastfeeding is important to you: BE PREPARED. It doesn’t come easy for all of us for a variety of reasons, but the more you know from the start, the quicker you will be able to solve any issues like ties that may come up! And always, always, always follow YOUR instincts. Mama truly does know best.
KELLYMOM IS MY FAVORITE RESOURCE FOR ALL BREASTFEEDING RELATED QUESTIONS.
I cried when I read about your hospital experience. Three weeks before my first child was born I bailed out of giving birth at the hospital because every time I questioned my OBGYN about what might happen if…, she’d tell me “I just have to trust her”, which I didn’t feel I could do, so I switched to a home birth midwife at the last minute. I had had visions of the kinds of things you described happening if I had been in the hospital for his birth, and I’m sure it would have gone very badly if we had been there given the complications we had even at home.
He too had tongue tie and was able to nurse much more efficiently after having it clipped. (He was spending most of the day trying to nurse before we had the procedure done.) I totally agree with you about educating yourself about tongue tie prior to giving birth. I had never even heard of tongue tie before that. Since then my daughter, who is 3 months old now, also has had hers clipped, and I’m now wondering if my middle child, should have had his done. He didn’t have trouble nursing but had bad reflux and is now having speech difficulties 5 years later, and even after dealing with it with my first born, I wasn’t aware of all the signs and symptoms of tongue tie. My oldest son’s tie was obvious, but you can’t always tell just by looking.
Craniosacral therapy has been very helpful for my daughter, as even after having hers clipped at 8 weeks she was still having some reflux due to tension leftover from her tie.
I’m sorry you had such a difficult experience at the hospital and initially with breastfeeding. Thank you for sharing your story. Hopefully it will help get the word about tongue ties out there!
Hi Laura! Thank YOU for sharing your story with me. It is a genetic “condition” – I now know that I have one. Makes sense why it’s difficult for me to say certain words and I was terrible at foreign language because of it.
My son, who is now 5 years old, had a very obvious tongue tie at birth and the dr. was able to diagnose it immediately (I guess that makes my baby one of the lucky ones). We had to wait a week before getting his snipped. Formula was never an option for me either. I didn’t know the level of toxicity of ingredients in milk or soy-based formulas at the time, but it was still not an option for us. It was so important to me for my son to be born without the presence of drugs or artificial food. When my son’s sugar levels got dangerously low due to his difficult time nursing the nurses said we needed to do something to get his levels up. After I explained my concerns to the nurses and lactation consultant they offered us the option for me to express colostrum into a small cup (like the to-go cups for salad dressings) and suck it up with a pipette and dispense it directly into the back of his mouth. We did this every other hour for an entire day. It wasn’t fun and it wasn’t the magical bonding experience I had dreamed of, but my son drank breastmilk right from the start and was able to nurse perfectly after his tongue tie was snipped.
Thank you for sharing your experience and your absolute honesty in admitting you accepted someone else telling you what to do. That is truly inispiring and humbling.
Thank you for sharing your story with me, Sabrina (and for reading mine!) We also did the hourly colostrum using the SNS. That was a long 24 hours I remember! Thankfully she only got 1 bottle of formula and I’ve put it behind us as a big learning experience. If possible, I do want to try to give birth in a birthing center next pregnancy!
Thank you for sharing your story! My 9 week old is having the procedure done next week, and reading about your situation makes me very hopeful.
Your little sweetie will do great – it was one of the best decisions I’ve made for my daughter since she was born! Sending love!
Thanks for sharing your story. I also had a tongue tie and all three of my children had one. When I was born the doctors told my mom that it didn’t need to be clipped so I could never latch, she stopped producing milk, and she had to stop breastfeeding. When I was two it was finally clipped and it is one of my first memories in life being strapped down at the doctor to have it clipped. My oldest was a preemie (born 5 weeks early) and was taken out of the room almost immediately. I sent my husband to follow our son and when he came back later with pictures for me he immediately noticed our son’s heart shaped tongue. The NICU nurses were wonderful breastfeeding advocates and told me there was one NICU doc that was willing to cut tongue ties and she was on the night shift that night. She clipped it with what just looked like medical grade scissors (I am not a medical expert) he cried for 1 minute then went on to nurse for two years. When I had my second and third at term and they were placed on my chest I knew what latching felt like and I knew what a tongue tie looked like. I immediately asked for it to be clipped and the one doctor that was willing to do the procedure had to be requested (and I live in a major medical research area). Both times he warned me that “this procedure does not guarantee a breastfeeding relationship,” my husband and I smiled and nodded knowing that it did. He did the same procedure with the scissors the babies cried for a minute and I nursed all of my children for many years. My mom always says one of her biggest regrets is not being able to nurse me. I wish tongue ties were talked about more often and more openly. It definitely made all the difference for me and despite my son’s startling early arrival I am thankful for those NICU nurses that were advocates for me and my breastfeeding relationship so I could advocate for myself with my other children. I hope my story is helpful to others. Doctors are willing to do it if you find the right one and the clipping method was quick, bloodless, and resulted in many years of bonding with my babies.