Today I'm pleased to share a guest post by Shannon, a lactation consultant in Harrisburg, Pennsylvania (her website). She shares a story about posterior tongue tie, sometimes called "the hidden tongue tie." A posterior tongue tie is one in which the frenulum is restricted in the posterior part of the tongue, and is sometimes buried under the mucosal membrane. These are only recently recognized as causing breastfeeding problems, and harder to diagnose because they aren't as obvious on observation, like classic or simple tongue tie.
At the bottom of this post you'll find some of Shannon's favorite links on tongue tie. For more tongue tie stories, see stories by Amy (also posterior tongue tie), and Danielle, Lisa, and Allyson.
While working as a social worker with at-risk families, I discovered the breastfeeding moms and babies on my caseload had stronger attachments than formula families. When they had challenges with nursing, there were few resources in their community and often they weaned early. I decided I would educate myself on breastfeeding so I could help them myself. I attended trainings, most intended for nurses, and was able to help my caseload with the basics. The funding for the program I worked at was cut and I was laid off. I took it as an opportunity to train full time to become an International Board Certified Lactation Consultant. Through an internship at a hospital, I gained the skills and knowledge to pass my board exam and then was hired to work full time at the hospital as an IBCLC.
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.
When Aidan was 5 weeks old, I attended a conference for IBCLCs. Nursing him during the sessions was difficult because the IBCLCs sitting around me noticed my damaged nipples, no matter how discreet I was. Unlike most people, IBCLCs can spot a sore nipple a mile away! They would notice how difficult it was for him to maintain latch. Each night after the conference, I would go home in tears, telling my husband how much I hated lactation consultants. I was so confused because they all gave different advice. I was told I must have thrush. Then I was told vasospasms. Then I was told oversupply and he was clamping down to slow flow. I was accused of letting him slurp his way on and not waiting for the wide open mouth. I was told I wasn't positioning him right. My head was a whirl, and every 2 hours I dreaded the next feed.
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.
After Dr. Coryllos clipped Aidan's frenulum, she handed him to me. When I took out my breast to latch him, he opened his mouth really wide. He had never done this before. He latched on and it was all instantly better. Within a week, my nipple healed and feedings were only 5-10 minutes. I was finally able to enjoy my son and breastfeeding. We continued to nurse for 2 years.
After the surgery, I told my mom Aidan was tongue-tied and she said, "So was I, and so was your brother." Now I know why mothers who really were committed end up quitting. Facing pain every day or struggling to pump can be so draining and interrupt the bond between mother and baby. I do my best not to judge a mom when I see her bottle feeding because she may have intended to nurse and maybe was not blessed like I was to have a 'road crew' remove the barriers. After my experience with nursing Aidan, my calling in life became even more clear and defined. Now as an IBCLC and nursing mother, my passion is to remove the barriers to breastfeeding for the families I work with and my community.
Here are some of Shannon's favorite links on tongue tie:
