What You Should Know About Tongue-Tie

Happy National Breastfeeding Month! In celebration of my own 14-month breastfeeding journey, I’d like to share a little bit about the struggles I had breastfeeding my daughter. I hope that spreading the word about tongue and lip-tie might help someone else avoid some or all of the obstacles we faced in the beginning.

Have you ever heard of a tongue-tie? How about a lip-tie? How about Ankyloglossia? That’s the medical term for tongue-tie, and I had never heard it in my life until it was causing me severe pain and preventing my beloved newborn daughter from getting enough to eat. Unfortunately, none of the medical professionals I spoke to before leaving the hospital seemed to know much about this condition, either, and two of them were lactation consultants.
 
Ankyloglossia is a hereditary condition. The frenulum (that little membrane that connects your tongue to the bottom of the mouth) is short and thick, and restricts how much your tongue can move around. There are different types of tongue-tie. In some people, the tie connects all the way to the tip of their tongue, creating a heart-shaped tongue that can barely move at all. This, obviously, is not that hard to diagnose.

But in other people, the shape of the tongue appears normal because the tie is toward the back of the tongue. The movement of their tongue is still restricted quite a bit: they cannot extend their tongues outward, and cannot lift their tongues all the way to the roofs of their mouths. My daughter was born with Type III Ankyloglossia, which is a type that is hard to diagnose because the problem lies way at the back of the tongue. (Type III is also usually accompanied by a high, arched palate and an upper lip-tie, both of which can inhibit nursing).

I knew before I left the hospital that something was wrong with our latch. But this was my first baby, and everybody was telling me something different. Lactation consultants said “Everything looks fine. You’ll settle into a rhythm soon and things will get easier.” The nurses said, “Everyone who told you it shouldn’t hurt was lying. It hurts like crazy for a couple weeks, but it will get better if you stick with it.” But there is a pain that is normal for the breaking-in period, and there is pain that is abnormal and points to a problem. With no experience and nothing to compare my pain with, I had no way of knowing which one I was having.

My gut told me that something was wrong.

One key indicator that my pain came from a latch problem was the fact that it was constant. There was no initial irritation followed by a “settling in” feeling. It was excruciating right through the entire nursing session, every time. And when my nipples started to crack and bleed, I decided that enough was enough and I had to go back to the hospital and see the lactation consultant.

The LC I saw this time knew all about tongue-tie, and as soon as my week-old daughter opened her tiny mouth to cry, she spotted the problem. When Maggie cried, her tongue stayed waaay down at the bottom of her mouth. A few quick tests to stimulate her reflexes showed the LC that Maggie was unable to raise her tongue up or bring it forward over her gums. Because of this, when she latched, she wasn’t able to form a good seal around my nipple, and that meant she would work really hard for a long time and only get a tiny amount of milk. That meant she was slow to gain weight, I was suffering from painful engorgement, and we were both frustrated that 45 minutes of nursing wasn’t enough to fill her tiny tummy.

her tongue was stuck in that spot and could’t move up, forward, or side-to-side

Once we had a diagnosis, the LC offered to refer us to an ear, nose, and throat specialist (ENT), who could clip Maggie’s frenulum, “releasing” her tongue-tie. As scary as that sounded, she assured us that the pain would not be long-lasting and that the wound would heal quickly. Many mothers report that nursing pain and difficulties are solved by this simple, quick procedure.

Beyond our nursing problems, she told us that down the road, Maggie’s tongue-tie could affect her speech and the arrangement of her teeth, requiring speech therapy and orthodontic work or even oral surgeries that might be avoided by correcting this small anomaly. We were convinced, but it took time to get a referral and an appointment. Two weeks, to be exact.

In the meantime, to let my nipples heal, I had begun to pump and allow my husband to give her bottles for about half of her feedings. She seemed perfectly willing to go back and forth, so I had hope that after her surgery, we could ditch the bottles altogether. Not so.

a few days post-surgery, the wound healed very quickly

Although most babies will nurse following a tongue-tie release, Maggie would not. Her tongue flew up to the top of her mouth and stayed there while she cried and cried. And I cried, feeling like the “worst parent in the world” award was sure to be mine. I couldn’t comfort her with nursing. We could hardly even manage to get her to lower her tongue long enough to sneak a bottle in there so she could eat!

For the next two and a half months, I pumped and pumped and pumped. I had the support, the information, and somehow, the energy to stick with breastfeeding. As a result, I established a good supply and through patient persistence, finally got my daughter back to nursing at three and a half months old.

Those early days were so hard, and I totally wanted to chuck my pump in the trash and give up. But somehow, day by day, I kept finding the resolve to keep pumping and keep hoping that we’d get past this nursing strike…and we did.

after surgery, finally able to extend her tongue out over her gums

What could I have done differently?

Had I known that tongue-tie was a potential cause of nursing pain, I could have asked the LC’s to check for it in the hospital. We could potentially have gotten it fixed within her first couple of days, before she had a chance to get attached to those bottles and before my nipples got so torn-up that they needed a break. We might have had the same result – I’ll never really know. But early detection and information could probably have saved us from some pain and tears. Now that I know tongue-ties are hereditary, you can be sure I’ll be asking them to check for it in the hospital when baby #2 is born this fall!

The medical community is slowing becoming aware that tongue and lip-ties are much more common than previously thought, and can be a pretty big deal. But many doctors are still uncomfortable making this diagnosis, and many lactation consultants are not trained to check for it in spite of the fact that it can inhibit nursing. If you suspect your baby could have this problem and it’s making your nursing relationship difficult, I recommend that you keep asking for referrals until you find someone who can give you a confident diagnosis, one way or the other. The earlier this problem is detected, the easier it is to fix, and the less chance it has of causing you problems.

If you have dealt with tongue or lip-tie in any of your children, tell us your story! How did it affect your child? How did you find out about it? Do you have any words of wisdom or encouragement for moms of tongue-tied babies?

Helpful links: Dr. Lawrence Kotlow of Albany, NY has become a leading expert in the diagnosis of lip and tongue-tie in young children. He has written several helpful articles about why these issues matter and what signs you can watch out for!

The American Academy of Otolaryngology’s fact sheet about tongue and lip ties.

And finally, here’s a Facebook support group full of people who have experience and knowledge that could help a mother of a tongue-tied child!

15 Responses to What You Should Know About Tongue-Tie

  1. Wow – so informative. What a heartbreaking few months that must have been! Thank you for sharing your story.

  2. What a fantastic article, thank you so much for sharing! I had heard of tongue-tie but never knew it could hinder breastfeeding so much. I bet there are SO many mamas and babies who struggled and likely gave up with breastfeeding because of this.

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  4. Thank you for posting this! Like you, I’m a first-time mama to a baby who was born with a tongue tie in October 2012. Like you, I suspected that something was wrong, but the nurses and LCs at the hospital just encouraged me to keep nursing. Within the first week or so, I was in excruciating pain and had cracked/bleeding nipples. We went to see a different LC when my son was 13 days old and she finally diagnosed the tongue tie. We had the tongue clipping procedure done that day. I’d like to say that it fixed the problem. Yes, it did help him some, but we never did manage to master nursing. He’d still get so frustrated at the breast. I think that he had grown accustomed to the ease of feeding with the bottle, and he didn’t want to work at the breast. So I ended up being a mom who exclusively pumps. Pumping has been a lot of work, but I feel good knowing that I did everything in my power to help my child. But you can bet that if I have a second child, I’ll be much more vocal early on if I suspect a tongue tie! There’s so much I know now that I wish I had known then. Thanks for shedding light on it for other new mamas who may be in the same boat!

  5. Lev actually has a top lip tie. This is why only his bottom teeth usually show when he smiles. I didn’t realize this was a thing until the dentist told us. It does not seem to impede his speech at all. It makes brushing his top teeth difficult, b.c he can’t move his top lip out of the way. Obviously it did not inhibit his food intake at all, but then he was formula-fed, so it wasn’t an issue.

    Remember Johanna? All three of her boys have had tongue ties. Her daughter did not. She said that it is more common in boys. She did not know for the first one and thought that breastfeeding was just excruciatingly painful and no one talked about it. She was picturing this mass conspiracy of silent women with bleeding nipples. They didn’t find out until her first had speech difficulties. For all of the other babies, she demanded that they check right after birth, got them clipped immediately, and had no more breastfeeding problems.

  6. My son was born with a mild tongue-tie. He did not get referred to surgery because his pediatrician said “if he can touch his lower lip with the tip of his tongue he’ll be fine”.
    I had two things going for me…my husband had the same thing and had his frenulum clipped at age six (!), so he immediately checked both our babies for it. And I had already successfully nursed my first baby, so I felt like an experienced breastfeeder.
    Even with the experience and knowledge I had, keeping my son latched on properly was very difficult. When he was very small, the only way he could maintain enough suction was in the football hold. By the time he was 3-4 months, we no longer had to use that position.
    Just wanted to suggest to any new moms out there who are struggling with a tongue-tied baby, try every possible position…some may make it easier for baby to maintain that latch.
    I admire your perseverance! I often say that if my tongue-tied boy had been my first attempt at nursing, I’d have never made it past the first week.

  7. I am now the mamma to two tounge-tied babies. If your child is tounge-tied I would like to add one more reccomendation to the list – get a refferal to a pediatric speech therapist. They work with babies with feeding issues. As the therapist explained it to me – there are two parts to the nursing relationship – Mom and Baby. Lactation consultants work with mom, speech therapists work with baby.

    My experience with my first son was similar to yours. The doctors did notice his tounge tie in the hospital and offered to clip it, at the time I refused as I am also tounge tied and it has never caused me any issues. Nursing was extreamly painful from the start but I was a first time mom and wasn’t sure what to expect. I worked with the lactation consultants on latching, they told me to keep working on the latch but my son looked good. Nursing continued to be painful so at one of his first doctors appointments, I had his tounge clipped. It didn’t help.

    When my son was about 3 weeks old, I finally went back into the lactation consultants at the hospital. By this point, my nipples were a bloody mess and breast feeding was like torture. She finally diagnosed our problem – because of the tounge-tie, my son had been unable to suck. Even though the tounge was now clipped, he still didn’t know how so he was essentially biting me every time he nursed but he did it in such a way that if you watched him nurse, he looked like he was doing it right. She had to actually stick her fingers in his mouth to find out what he was doing. She reffered us to pediatric speech therapy. The speech therapist was amazing, she gave us exercises to do with my son and holds to use while feeding him to teach him how to eat properly. We saw her twice a week for 3-4 weeks until my son ‘graduated’ from speech therapy. Before meeting the therapist, I was ready to give up breast feeding but after our sessions I was able to nurse my son until he was 14 months old.

    I just had my second son earlier this month, who is also tounge-tied. In his case, the tounge-tie was caught while we were still in the delivery room. I immediatly requested consults with lactation and speech therapy. The tounge tie wasn’t as bad as his brother (the tounge can still extend past the gums) and he was able to suck so the therapist reccomended against clipping it as this can confuse the baby and potentially cause more issues. We still had a rough time getting started nursing and I still got some bloody nipples but I knew what was going on and how to get help this time so things didn’t get so bad. I was able to work with lactation (no need for speech therapy this time) before and after we went home to get the latch worked out. My son is now 4 weeks old and nursing well and my nipples are all healed again.

  8. I just had my 4th child and couldn’t believe how horrible nursing was. It was like it was with my first and I didn’t think it should be that way. At our one week visit with the midwives they discovered his tongue tie (he couldn’t extend it past his gums) and referred us to a specialist. He was great. He got us in the next morning before he started seeing patients! He was due to go on a month long vacation 4 days later! He discovered not only a tongue tie, but a lip tie as well. He performed a laser detachment for both and then referred us to a LC to help him learn how to nurse properly. I can’t say it’s been perfect since then, but so much better. I don’t want to give up anymore. I just couldn’t believe that I had nursed 3 babies before and now with my 4th I wanted to quit because the pain was so intolerable. While at the specialists he asked if he could look in the mouths of 2 of my other children that were there and said that they were both tongue tied. My first born. Oh how I would have loved to have know that and taken care of it for her (and me) when she was newborn. Everyone kept giving me advice and must have thought I was a big baby because I kept talking about how painful nursing was. Even the LC from the hospital was no help. She basically called me a liar before I got there when I said my nipple was torn 3/4 of the way around. And then finally saw for herself that I wasn’t lying, but still couldn’t help me. My 2nd was also tongue tied, and worse than the first, but I never had problems nursing her. My 3rd wasn’t with me but we joke about her having the longest tongue in the world, so I think she’s fine. I think it’s so much more common than anyone realizes.

  9. She found out in a weeks time. It took 3 months, of 20 hours a day breastfeeding for us to figure out Abby had a tied-tongue. I was never able to continue breastfeeding after I gave her a bottle a day before her procedure. Her doctor at the time did not care to figure out what was wrong. And just a heads up, this doctor is a very well known and is still practicing in this valley for over 15 years now. Defiantly do your research on the doctor to see if they are pro-breastfeeding.

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  11. That is so familiar to my story. A rush of me memories came flooding back to those hard trying days when my daughter was born. Brought tears to me to think about and to see how far we have come. Thank you for sharing your story.

  12. My daughter was born 3 and a half weeks early and I was shocked when one of the first things my husband asked was, “are the going to have to clip her tongue?” Apparently he was tongue tied and didn’t have his tongue clipped until he was almost 3! The doctors told his mother that it would correct itself. I feel awful that my husband had his tongue clipped at an age that he can remember but thank god! If it wasn’t for him I wouldn’t have known to ask the LC at the hospital and have it clipped immediately… We still had a lot of latch issues and she developed a preference to bottles but after almost 4 months she has finally started nursing. I thank god I was able to take 4 weeks maternity leave and work from home when I did return to work. Because of that I was able to pump religiously every 2 hours and establish my milk supply in the mean time. I also thank god for the immense patience He blessed me with. It was a long hard road and we’re still traveling it!

  13. Thank you for sharing. This is great information. I found out my son had tongue tie when he was two days old while in the hospital. We had a rough time because he had posterior tongue tie. I need to research it more because the ENT did not meet with us, only revised him and sent us home from the hospital on day three. You inspired me to share my story (although not as in depth because of the circumstances). I learned a lot about the issue from your post! Did you have a similar experience with #2 since the condition is hereditary?

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