Tuesday, January 04, 2011

Posterior tongue-tie

In last weeks' post A Proactive Approach to Breastfeeding, I briefly mentioned tongue tie as a possible culprit for breastfeeding problems.

Dr. Denise Punger of Permission to Mother argues that posterior tongue tie is often a culprit in breastfeeding difficulties. She lists several common symptoms of tongue tie:
Sore nipples
Open wounds
Better with a shield

Reflux, food/stomach sensitivity
Poor weight gain
Lengthy feeds
Intense baby
Clenching down

Cassandra of wrote in about her daughter's posterior tongue tie:
My 3 month old recently had a posterior tongue tie fixed after being told by three different IBCLC, my midwife and a pediatrician that nothing was wrong with her. She got clipped and like magic latched for the very first time. I'm doing what I can to spread the word about this rare but severely underdiagnosed problem since if I hadn't been extremely stubborn and kept at it, this problem would never have been taken care of. Here is a very in depth and fantastic resource for diagnosing tongue tie of every type: http://kiddsteeth.com/articles.html

I wanted so very badly to breastfed I seriously almost killed myself over not being able to (yay hormones) and it's incredibly frustrating that it was a problem that could have been fixed, but nobody caught what was actually a pretty obvious tongue tie. I don't want to see any other moms go through the same thing.
Yesterday, Shannon shared her story of posterior tongue tie at the Motherwear Breastfeeding Blog. Shannon was an IBCLC and still did not pick up on the tongue tie! It wasn't until she was in a room full of IBCLCs (most of whom misdiagnosed the problem as well) that she met one woman experienced with posterior tongue tie. Like Cassandra's story, as soon as Shannon took her baby in to have the tongue tie clipped, the baby latched on perfectly for the first time. Here are a few excerpts from her story:
After the birth of my first son Aidan, I was so excited to nurse. After spending so many years teaching breastfeeding, I was finally going to experience it myself. In the labor and delivery room when I nursed him for the first time, I was surprised at how painful it was. I knew I was latching him correctly; after all, I was the expert! When he came off, my nipple was misshaped, smashed into a slant, like a new tube of lipstick. I looked at his tongue and he could stick it out, so I thought it was not tongue tie. By the next day, my nipples were cracked and bleeding. The agony was too much, and I had to pump and bottle feed most of the time to give my nipples a break. I was devastated and thought I might have to change careers.

I was ashamed that as an IBCLC I couldn't get this right, and the only person I could be honest with was my husband. When friends and colleagues would ask how things were going, I was not fully honest about how terrible I was feeling. When Aidan nursed, it was more than just a pinching or biting feeling. It was irritating, like sand paper on my nipple. His sucking was choppy, and he was having a hard time maintaining latch. Feedings were 45-60 minutes long....

Then there was one IBCLC, Debra Page, who saw him stick out his tongue and said I think he is tongue tied. I asked her to explain because when I worked in the hospital, the babies I saw who were tongue tied could not stick out their tongue past their gums, and if they did, it was heart-shaped on the tip. She said there were different types of tongue tie, the obvious ones are type 1 or type 2, and it looked like Aidan had a type 3 posterior tongue tie. I had never heard of this. She explained that he couldn't elevate or lateralize his tongue, and when he did stick it out, it was duck bill shaped, not pointed.

The surgeon we went to, Dr. Elizabeth Coryllos, explained that she would do the frenotomy in the office and she would numb him under his tongue. I began to cry. She assured me it would not be painful to him and he would be able to nurse right away. I told her that was not why I was crying. I explained to her I was upset that I was not able to solve this on my own, that as a professional and as a mom I felt like a failure. Then she gave me the best advice I have ever heard as a mom. She said even if I was the best race car driver in the world and I had the best car ever built I could not win the race if a tree fell across the track. Someone would have to remove the barrier so my car and I could continue on our journey. It was not my fault that nursing was not going well. I had the best baby in the world and I was the best mom for him; we just needed to remove the barrier to continue on our journey.
In an AAP newsletter on breastfeeding, the article Congenital Tongue-Tie and its Impact on Breastfeeding (PDF) explains the four types of tongue tie and how they can affect breastfeeding.
Types 1 and 2, considered “classical” tongue-tie, are the most common and obvious tongue-ties, and probably account for 75% of incidence. Types 3 and 4 are less common, and since they are more difficult to visualize are the most likely to go untreated. Type 4 is most likely to cause difficulty with bolus handling and swallowing, resulting in more significant symptoms for mother and infant.

An infant can obtain milk from a bottle without the wide gape and consistent suction needed for a good breast latch. If the tongue-tied infant cannot maintain the tongue over the lower gum during sucking, the “phasic bite reflex” (chewing) is triggered. This chewing motion is ufficient to transfer milk from the bottle, but is clearly problematic at breast. Bottle feeding allows milk to drip into the mouth without effort, thus requiring less tongue muscle effort (such as tongue grooving, cupping and depression) than needed for breastfeeding. Breastfeeding requires well-defined peristalsis from the front to the back of the tongue as well as tongue–palate synchronization. Some tongue-tied infants cannot even manage a bottle.
Even more simple forms of tongue tie can be overlooked. In Totally Tongue-Tied, Sheila, an experienced breastfeeding mom, describes her difficulties nursing her third baby. She had expressed concern to her pediatrician about possible tongue-tie, and he told her that " there was nothing wrong with Kyle's tongue since he could extend it out past his lips." But it turns out her baby was tongue-tied. His latch improved somewhat after the frenotomy, but he still had to learn how to latch, to drink, and to extend his tongue properly. She writes:
I was frustrated that it was taking so much work to train him to suck, but the lactation consultant reminded me, "He hasn't been able to move his tongue out of his mouth for 9 months. It's going to take more than a few days to teach him to use it properly to nurse." The next day, I noticed Kyle was actually sucking and swallowing while at the breast, so I started massaging the breast while he was nursing to encourage the milk out and his swallowing per suck ratio increased dramatically. He was still requiring about an ounce of additional expressed human milk after nursing most of the time, but this was major progress. At three months, Kyle is now nursing totally independent of any supplements, and only occasionally requires adjustment of his sucking.

I never expected my third child to be the most difficult to breastfeed. I feel very fortunate to have an extensive network of support from friends and family. I am eternally grateful for a loving and supportive husband who feels as strongly about the importance of mother's milk as I do. I am also thankful for the support and encouragement I have received from my La Leche League friends. Without them, I feel I may not have been able to provide my son with the best nutrition available to him, his mommy's milk.


  1. Debbie Page also diagnosed my first daughter's posterior tongue-tie. She was a godsend for my breastfeeding relationship. It is so important for physicians, nurses, and IBCLCs to be aware of this problem because it can cause tremendous pain (physical and mental) despite what "looks like" a good latch. I was fortunate that I had an abundant milk supply and that my baby regained her birth weight quickly. Many other women are not so fortunate and an undiagnosed tongue-tie can quickly end the breastfeeding relationship.

  2. Very interesting and good information to have. I wonder how many of these undiagnosed tongue-ties are the culprit of the "my baby couldn't latch" stories.

  3. Kelly - It definitely ended mine. Even after she could latch, I still suffer from low supply as well as getting no help with trying to handle the difficulties of learning how to breastfeed a 3 month who never has before. I've given in to just pumping for her.

    Thanks for posting this Rixa. You're awesome!

  4. My second had tongue tie. It was very obvious - at least to someone who knew what it was, which I didn't. Yet, none of the doctors or nurses at the hospital said anything. I have no idea whether any of them noticed. His nursing seemed odd, but I couldn't tell that there was a real problem until about Day 2 when we were home. It was obvious by that night that he wasn't getting enough to eat, and we couldn't figure out why. I tried pumping, but I couldn't get enough that way, so I got out my nipple shields as a last resort. (I had had to use them with #1 for a couple of weeks due to inverted nipples. They were a pain to use and difficult to wean him from, so I didn't want to use them again.)

    Fortunately, the next day was his 3-day check-up. The pediatrician took one look and said, "This baby has tongue tie. Would you like me to clip it?"

    Phew! It only took a couple of days for him to get used to his tongue and to wean him off the nipple shields. He forever was an aggresive sucker, though, and I am still bitter toward the hospital staff about the whole thing. It is definitely a good idea to be familiar with what tongue tie is if you want to breastfeed.

  5. Thanks so much for posting this. We're already on alert for tongue-tie in our future children because our first had it but I had no idea there were so many types.

    Why, why, why don't mothers tell their kids *they* were tongue-tied!? I actually identified my son's tongue-tie about 36 hours after he was born (the first time he was really crying and I could see that classic heart shape) because I had just read another blogger's post about her son's tongue-tie. Luckily a nurse noticed as well and had a second lactation consultant come to see him the next morning before I even had a chance to say anything. We were able to get it clipped before we left the hospital and before my nipples were totally destroyed (the doctor who did the surgery told us that it was one of the worst cases of tongue-tie he had ever seen). When I said something to my mom about how odd it was since there is such a strong genetic component and neither I nor my husband had heard of it in our families she said "Oh, you had that too but it wasn't that bad and the doctor said it wouldn't interfere with your speech so we didn't do anything." Thank goodness for that observant nurse and my lucky blog reading because otherwise my son and I might not have had a successful breastfeeding relationship. You can be sure I will be telling my kids (and their future partners) to be on the lookout for this condition!

  6. Some babies with posterior tongue tie may not only be misdiagnosed, but a simple frenotomy may not solve the issue at all. Some cases will require a frenectomy, done in hospital under general anesthesia. Three of my six children have had this surgery. One has had lasting speech/eating problems (he is 6.5 years old) and the other 2 (twins) had the surgery early enough that their speech has been completely normal. Breastfeeding was a nightmare until several weeks after the surgery. If I had not nursed several other babies successfully, I would have given up, I'm sure. I wrote an article for my local LLL Leader's newsletter which I would be happy to share. Also, here is a link to a blog post I wrote about our experiences: http://www.itstwinsanity.com/2008/12/surgery.html

    I wish that more people were aware of the problems that posterior tongue tie can cause, and would recognize that sometimes a simple clip is not enough to fix it. Fortunately I found a great surgeon who was experienced in correcting posterior tongue tie and my experience as a LLL Leader helped me to quickly identify the problem. Many mothers will be told that their baby is not tongue-tied and will subsequently give up breastfeeding.

  7. Is it possible to have a good breastfeeding relationship with a very mild case of tongue tie? My daughter is almost 2yrs and still nurses but after reading this post I wonder if she was/is slightly tongue tie. When she was first born she had a very strong suck(like a 4day old according to the CLC) but at the end of every breastfeed my nipples were very misshapen. I had blisters by day 2 despite her having a "perfect latch". I actually caved once in the hospital and tried formula because she would only stay latched on for about a minute but she puked the formula right up, so I said no more of that. I ended up having to give her a bottle of expressed milk several times a day for the first 7wks or so because having her nurse was the worst pain I've ever felt. I was literally shaking from pain and crying non-stop when she did nurse. I felt like I was failing because I had to use a bottle. There were several times when my husband told me that we could just use formula because the pain was so bad but I refused to because I wanted to her to have the best, even if I was in tears, so he just sat behind me and rubbed my back through it. Eventually my nipples got used to it, but even now it still hurts at times. Also, when she stuck out her tongue it always reminded me a little of a snake tongue but I never thought anything of it because she could stick it out past her gums.

    P.S. I don't have a google or blog account but my name is Emily M.

  8. I should have also mentioned that before the tongue clipping, I was still having a very hard time dealing with not nursing. From that I wrote a guest blog post at Bring Birth Home regarding breastfeeding relationships that don't turn out the way we had hoped:

  9. Emily - it is absolutely possible to be able to breastfeed through a tongue tie - some babies cannot maintain a supply/extract milk with a tongue tie, some can but really put the mom through a lot of pain, and some are able to nurse effectively and comfortably even though we can see a tongue tie. It sounds like your daughter put you through a lot of pain, for which I am so sorry and so impressed by your perseverance!! Whether or not it was caused by a tongue tie is hard to say. The "classic" tongue tie presentation is a "heart shaped" tongue when baby sticks it out - maybe what you're referring to by a little "snake tongue" in that it looked forked? Probably the best way to get a clear diagnosis is to find an LC, pediatrician, or other professional (or example ear nose and throat doctor) who is experienced with tongue tie and can take a look at your daughter's tongue. She is certainly not too old to have it clipped IF it is tied, and it may improve your comfort with nursing as well as future speech and eating for her (on the other hand, those may never be an issue). Again, I am so sorry that whatever the reason you went through so much pain with nursing. No mom should have to deal with that just to feed their baby.

    Rixa - thanks for posting on this topic. As a very new LC I'm still working on my knowledge and ability to diagnose tongue tie, particular posterior tongue tie - still so hard for me to identify. But it is so important! There is a very compelling article in a recent issue of Pediatrics (http://www.ncbi.nlm.nih.gov/pubmed/20498175) on a baby who was diagnosed as failure to thrive at 6 months old. It was a bit of a perfect storm of factors (poor weight gain that went undetected/unremarked, parents who did not recognize an abnormal growth pattern because their first baby was born very preterm, etc.) but the family had noticed and asked about tongue tie from the first and was brushed off repeatedly. The article is extremely interesting and they discuss the debate in the pediatric world over tongue tie and clipping.

  10. My 3y/o had tongue-tie, which I saw immediately upon his first nursing, as I thought that I didn't want my MIL to see his "forked" tongue and blame me for him being posessed or somesuch nonsense (the strange worries that creep into a new mom's mind) Anyway, I pointed out to my UK NHS midwife, and she agreed that it was mild TT, but there was nothing to be done for that kind, if it was more severe, then the NHS would eventually take care of it. I left it at that, as I was an American living in the UK-what did I know about the NHS?

    So I muddled through the pain and when he was about 6 months, after his bottom 2 teeth emerged, he fell, bit his tongue, and severed the tie. I nursed him to comfort him and the initial pain was decreased DRAMATICALLY.

    A month later, I was at a breastfeeding support group, and a young mother was in terrible pain for the entire session, even with a health visitor who specialized in breastfeeding issues trying to correct latch and positioning. I asked to see baby's tongue, and identical mild TT to my son. I told the HV about the tie, and she'd never saw TT before. HV said that she didn't know of clipping or where to go.

    About a month later I saw Mum and bub and she said she got on her GP and midwife's case about clipping the tie and pronto. She knew how to navigate the NHS, and her baby's TT was clipped and she was enjoying breastfeeding pain free. However there was only one surgeon in the 2nd largest city in the UK that would do it.

    The UK has the lowest breastfeeding rates in Europe, so you can see why these particular HCP were clueless on TT as TT doesn't pose a real problem with bottle feeding.

    A previous poster said that she was TT, but didn't know it until adulthood, same for me, but I had more issues with gums and inner lip tie. I told my mother that I had ties and that was why she cracked, blistered, and bled. She cried. She'd been carrying around my-body's-failed-me guilt for 30 plus years for formula feeding me.

    I'm going to be a LLL Leader for my little corner of rural America, and TT info and who will treat it will be part of my lending library.

    Thank you Rixa for writing your blog post!

  11. I need to amend something as it reads wrong. What I wrote makes it sound like there was only one surgeon in the entire UK and that one would have to travel to the 2nd largest city, not so. We were living IN the city, just that there was only one to be found in that particular city. I hope that's a bit clearer

  12. I just got home from having my son's PTT corrected with surgery.....the relief is amazing! I'm so glad I had read blogs like Heather's and had a few other friends go through it this past year so that I knew something was wrong. If this had been my first nursing experience and hadn't heard of PTT, I would have given up for sure despite the fact that he is gaining weight...just too painful.

  13. Because of my persistance my daughter nursed with a severe tongue tie for three months. She just made the minimum weight gains and it wasn't until I mentioned that she had a blue line next to her tongue that the doctor actually looked. We were sent to the ENT who said there was no way she should have been able to nurse and didn't know how she had been able to thus far. The ENT said her tongue was so depressed that everything that should have been under her tongue was pushed out to the side.
    She was put under and have a frenectomy done. We were very blessed and she nursed as soon as she came to and really had no problems afterward. She nursed until 18 months and then I got pregnant which caused her to permaturely wean.

  14. My first and third had classic tongue tie. I had to fight hard to get their frenulum's clipped because one was full term and the other was a preemie so they had different doctors. In the week it took to get my first one's tongue clipped my milk supply dropped really low. We recovered but it was a lot of hard work.
    My preemie was a 31 weeker and couldn't nurse at first (my second was a 33 weeker and did nurse from the beginning though) and I fought and got his done while he was still being fed ebm through his NG tube. He was my best nurser yet!
    It baffles my mind that so many places in the U.S., they push and push circumcision but fight you on every step to correct something that benefits both baby and mother and is less risky.

  15. So, apparently, my daughter and I nursed through what happens to be a pretty serious nursing problem...

    I had split nipples, a little bleeding (not much), she too had a 'perfect latch'...it was painful for about 7 weeks (the first two normal uncomfortable weeks, and then 5 weeks of thrush/nipple problems)...

    Her tongue is tied to the end. She never sticks it out all the way, and when she does, its snakey looking.

    She just self-weaned at 17 months :(

  16. I knew it! I just KNEW it! My sons had tongue tie and I couldn't get ANYONE to listen to me about it. My second son is three months old and he has all those classic signs: his breathing/swallowing coordination sucks (if you will pardon the pun). He's constantly choking and gagging when he nurses. He goes on and off the nipple repeatedly in a feeding and rarely will nurse longer than five minutes in a stretch. He doesn't open his mouth and extend his tongue to latch. Despite my best efforts to work with him, he simply slurps in the nipple. My first son was the EXACT same way, only worse and our bf-ing ended in despair after 13 months of struggling with mishappen sore nipples, repeated episodes of thrush and supply issues. His older sister, my first baby, I nursed with NO problems AT ALL for 18 months.

    Soo, someone tell me! Where can I go to find someone who will listen to me and help out my poor little man? My midwife just poo-poohed my questions about it, so I'm reluctant to go back to her...

  17. Herb of Grace -
    I used this website to find the ENT that clipped my daughter. Outside of this I don't know of other resources, hopefully you can find someone on there for you or someone else will speak up. Good luck!

  18. Thanks for addressing the topic of posterior tongue tie and spreading awareness! As a private practice lactation consultant I'd say that 50-60% of the babies coming to my practice have some sort of oral restriction, like posterior tongue tie that have usually been missed by other providers the family may have already seen. More awareness in the medical and birth community is sorely needed. Blog posts like this spread the word, thanks!

  19. I read this as I lay here nursing my 10 day old babe who just had his frenulum clipped yesterday. My first (who happened to turn 10 yesterday) was also TT. I couldn't find anyone to clip it, but we persevered and had a long successful BF relationship. His eventually stretched w/no complications (speech, weight, etc). This baby had a very different TT, much thicker membrane and classic heart shape tongue. His bled a lot more than I expected w/the clipping and he was very upset, but I don't believe his ever would have stretched like my 10yo did so it was the right thing to do. Unfortunately, I think I'm going to have to do some suck retraining w/him if things don't improve more in the next couple days.

    Interestingly when I had my 10yo we realized my sister and mom are also TT. My mom was able to nurse me, but my sister couldn't and she had to FF her (this was the 70s and she was a young mom w/zero support).

  20. very useful post. thank you!

    my son's tongue was clipped 1 day ago. when are you supposed to see the difference in sucking?

    he is 3 weeks old, and unfortunately clipping didn't make a big difference (nipples still hurt, he still can't maintain a good latch).

    I guess he needs to be re-trained? how? and how long will it take?

  21. Hi - Does anyone have any photos of posterior TT so I know what to look for other than the shape of the tongue tip? Where is the frenulum too tight/short?
    Also, do any of your children have a tight/short upper lip frenulum?
    My son frets at the breast, pulls off regularly and my nipples are always mis-shapen, like a lipstick. He has a powerful suck but I notice he doesnt protrude his tongue very far. he can however elevate it and can form a dip in his tongue, but not in conjunction with protrusion so all the nipple compression happens against his alveola ridge Iguess (the gums where the top teeth will come) Luckily I have a good flow so he still gians weight well (especially when i feed in the night when he's half asleep)
    Any thoughts and photos welcome

  22. I'm so pleased to find this blog...after 5 weeks of poor feeding, a hungry baby and sore nipples my midwife eventually diagnosed what she thought to be a posterior tongue tie, I waited patiently for my appointment to come through then eventually called the hospital who said they could see me that same day. The diagnoses at the hospital dental unit was a very slight anterior tongue tie which was snipped there and then and feeding was immediately noticably better but not great (I never had to de-latch my baby with my little finger to avoid his strong suck like htey had talked of in the anti natal group)and I continued to supplement with a formaula feed each day.
    Needless to say at 7 months I gave up breastfeeding and the freedom and relief I feel is immense, I certainly didn't realise the stress it was causing me.
    My baby is now 8 months and today I have been told that he may have an anterior tongue tie afterall as his tongue twists to one side, he eats well but I am concerned about the affect it will have on his speech. My Well Child nurse has have told me to keep an eye and she will check on this again at 9.5 months but should I delay getting this treated? Any advise would be much appreciated. Beth, NZ

    1. Beth you should definitely get it checked. My son has just had his lasered at laser life care institute Auckland and it has changed my life. He is three months and can now lift his tongue and latch better! No one diagnosed his problem as he was gaining weight and it wasn't until I asked the doctor to check that the ball started rolling. When we went to the laser specialist he asked me if anyone had checked for the fraenum tie ( under the tongue). I said no. When he lifted up his lip I couldn't believe it. It was so attached. He said in most cases of tongue tie there is fraenum attachment too and that is why when only the tongue tie is released often the breastfeeding still is not improved. When babies breastfeed they need to make fish lips and if the lip is attached it is impossible. Laser is great as it took only ten minutes and no bleeding. He fed straight away and is improving all the time. My only regret is that we didn't get it done sooner as I'm going to have to change the way he has fed for 3 months. Now I know he'll be able to poke out his tongue and lick an icecream!
      Christina Auckland NZ

  23. Thanks for posting this. I realize this is an old post but I hope you are still responding to comments on it. I had twins about 5 weeks ago. My son is nursing well but my daughter is not. She can only latch on if I'm wearing the nipple shield. I have tried to latch her on many times without the shield and she only on the tip of nipple, ouch. I had one lactation consultant that she didn't see anything that could be clipped but that my daughter just has a short tongue and we have to wait till she gets bigger to be able to latch. I'm wondering how I go about finding someone to give me a second opinion and possibly clip if she does have a tongue tie? A dentist? I don't know where to start.

  24. MamaB, it looks like you live in Iowa based on your blogger profile? I definitely think you need a second opinion. Unless the person has a lot of experience with tongue-tie (and can identify posterior TT as well as the more obvious versions), they could very well be missing it. The LC probably just looked under the tongue and didn't see the typical frenulum TT underneath the tongue. How to find someone else? Hmmm....try posting on various birth/mothering boards for starters. Ask IBCLCs if they can diagnose or if they know people who can. As your family doc/ped if they know who in the area might specialize in this. Feel free to email me if you want to correspond further!

  25. My 4month old had her posterior tongue tie and upper lip tie corrected a month ago. She was gaining fine, but had excessive gas, poor, weak latch, could not flange her upper lip correctly, slipped off the breast, etc.

    We drove four hours to find a competent provider who could revise her tongue and lip tie with a laser. General anesthesia is NOT required! This is a very MINOR procedure. It was quick, maybe five minutes? It was nothing compared to a circumcision, and we don't do general anesthesia for that! There are actually very few nerves in the frenulum, usually.

    The BEST thing for someone to do if they suspect tongue or lip tie is to join The Tongue Tied Babies Support Group on Facebook and read the pinned post which lists all the potential signs and issues with ties. Then post a picture and get some feedback from all the been there, done that mamas, LCs, and docs who are on the page. Then, look at the providers list, and if at all possible see one of those providers. Many ENTs, pediatric dentists, etc, do NOT know how to diagnose a posterior tongue tie, and many do not revise enough. Seeing somebody with experience is SO important. I am so glad we drove the four hours to find someone who had the skill to find her posterior tongue tie and agree that it needed revised. She is nursing so much better. :)


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