Trouble Breastfeeding? Could be Rare Type of Tongue Tie

In last week's post A Proactive Approach to Breastfeeding, I briefly mentioned tongue tie as a possible culprit for breastfeeding problems. Cassandra 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 breastfeed, I seriously almost killed myself over not being able to (yay hormones, 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.


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