I once had a life-size, cardboard cut-out of Captain Jean-Luc Picard. I was 18, in college, and I spent every night at 11pm watching reruns of "Star Trek: The Next Generation" (or "TNG," as we Trekkies call it) at someone's house -- it capped off every day. For reals, I wish I had a picture of me with my paper Picard -- Flat Stanley's got nothing on Jean-Luc. 

When I first started with TNG, I was immediately pulled in by Wesley Crusher. Wil Wheaton had been a favorite of mine since the summer I watched "Stand by Me," 500 times between 7th and 8th grades. So imagine my surprise and sorrow, in the 13th episode of the first season, Datalore, when Captain Picard yelled, "Shut up, Wesley!" to my favorite teen in space. In this scene, it can be heard uttered by three different people, including his mom, Dr. Beverly Crusher:

I love to make memes -- they are a fun way of offering a small spark which might ignite one's full curiosity. 

For this meme, I extrapolated what I knew of Wesley and what people think of him -- both on and off the screen (the characters and the fans). Although brilliant, he didn't always escape the naivety of childhood -- hence his smiling face and eagerness to believe the professional who states, under no circumstances, can a tongue tie affect breastfeeding. Of course the insinuation here is, the professional hasn't been trained to properly assess, is likely choosing one or two pet methods of "examining" a tongue tie (one being simply looking at it, the other perhaps seeing it extend over the gum line), to decide -- despite the mother's and baby's issues -- it isn't the tongue's fault. If you are told your baby has a tie but it isn't causing your feeding issues, you may want to seek out a professional who knows proper assessment and evaluation requires more than just taking a peek into the baby's mouth.

The best list I can suggest is held within the files of Tongue Tie Babies Support Group on Facebook. These are often called preferred providers, but that term is inaccurate; these are professionals who have received enormous amounts of positive feedback from families. TTBSG goes on to research these providers in-depth before choosing whom to add to the master list. This doesn't mean there aren't other capable providers out there -- in fact, if you know of someone who is not on the list, contact an admin to let them know. And if you still don't see someone near you (and by near, let me share we traveled 4 hours away to see a listed provider, and I am counting that as "near"), be sure to see if there is a local state/region tongue tie group for your area. With the addition of these smaller, more specific groups, families have more precise information to share, and often they know of providers who haven't gone through the review process to be added to the TTBSG file. There are often suggestions for IBCLCs, body workers, and other professionals who can help you with the assortment of problems that surround tongue tie. UPDATE 12-30-15: TTBSG will no longer be maintaining and updating this list of providers. Instead, ATTE will be responsible for keeping lists of local providers in the State/Region groups. 

I am so grateful in my area we have an incredible dentist in Bakersfield who treats tongue and lip ties -- thus eliminating the lengthy travel some families have to make (she wasn't offering this service back when we had our baby treated). Dr. Dana Yeoman has studied under two excellent doctors experienced in tongue tie issues and utilizes that knowledge to help families in the Central Valley. 

The addition of the face-smacking captains is just a bonus. 

When wondering if your baby might have a tongue tie or lip tie, many questions arise. Shared here are some visible, physical features babies with Tethered Oral Tissue may manifest. In dialoguing with hundreds of moms, these seem to come up again and again. These tips can also be helpful for doulas and other first-responders helping breastfeeding moms in the early days. 

Image 1:  Lip blisters are often thought to be a normal part of nursing, but these can actually be a sign of something more. That cute little callus under your baby’s philtrum could show he has to compensate with extra lip-grip versus being able to stay latched to the breast via a well-moving tongue and lip combo. 

An upper lip that doesn’t easily fan over the breast often folds (image 2) or tucks (image 3) during nursing. If baby has what I term “smeared lipstick mouth” after nursing, this shows the lip didn’t flange as it should. Of course this can be positional, as well; if this frequently occurs, even with increased attempts to improve baby’s latch, it can be something to super sleuth. 

Image 2:  Accordion fan of a tight lip – see that horizontal line under the nose? Instead of opening to the breast, the upper lip folds. The crease will show as a red line once baby unlatches, as in image 1.

Image 3:  Another compensation for a tight upper lip is that it tucks inward. Some moms can manually turn out the lip by sweeping with a finger; other moms report the lip seems to turn into a tight band of tissue that is difficult to manipulate – it depends on the flexibility of each baby’s frenulum and lip.

Image 4:  An easy way to get an idea of potential for tongue tie is to flip the upper lip and see how the frenulum attaches to the gums. This is less invasive than digitally checking your baby’s tongue. Many professionals agree, 90% of the time there is an upper lip tie, there is likely a posterior tongue tie. This can be a key in deciding how to proceed.

Figure 5:  “Two-tone tongue” is a phrase Cathy Watson Genna shared with me when I mentioned something I noticed on my own baby. It is often mistaken for thrush, but often there is a line across the tongue, unlike thrush which can come in patches and doesn’t seem picky about where it develops. If the tongue has impairment in function, it doesn’t get the normal help shedding cells (think about a tongue scraper), and the white color reflects that.

Figure 6:  Another low-hanging fruit feature is how a baby’s palate looks. When a baby cries, yawns, or is just hanging around, you can often take a peek to see his palate. Ideally, the palate is a horseshoe-shaped, wide surface, because proper swallowing and tongue movements shaped it before birth. Babies with restrictions often have vaulted palates – arch, bubble, channel, or otherwise, due to their inability to make these ideal movements.

Figure 7:  I don’t know if there is a technical term for this, but many moms report their babies have “tongue dents.” These dents can occur as the tongue is being pulled by the underlying restrictions. 

Figure 8:  When crying, a baby’s tongue may curl or cup up. Again the force of the restriction is controlling the range of the tongue’s motion.

Figure 9:  If you feel brave enough, and baby complies, you can try to feel for the frenulum yourself. Your baby may be upset by this, but as his parent, your fingers will be the most comforting to him – so if you are really wondering what’s going on, get in there and see for yourself. Place baby in your lap with his feet at your knees and come in from above his face. Gently use your index fingers to try and lift his tongue...and better if you have a partner ready to snap some pictures. 

I don't claim to use proper terminology. I always welcome feedback and corrections. Find me on Facebook. 

​Much appreciation to Dra. Kelly Marques Oliveira, IBCLC, for translating this into Portuguese.

Tongue Tie Babies Support Group, on Facebook. A peer group with over 20,000 members. A great place to learn local option, ask all your questions, and get support from other families impacted by ties. 

Advocates for Tongue Tie Education (ATTE) is a group for parents and professionals. Resources on their website include parent info sheets, educator packets, provider toolkit, and a tie gallery. They also have a Facebook group.

Catherine Watson Genna is a treasure trove of information. She is a woman with vast experience and an inquisitive mind, and she offers her knowledge on her website, in books and papers she authors, and in presentations that she travels around the world to share. 

Dr. Bobby Ghaheri has been exploding with informative, relevant blog posts. He is not only an incredibly experienced ENT who performs revisions, he is also a father and husband whose introduction to the world of ties came through his wife and baby.

Dr. Larry Kotlow has a great site that can be a starting point for any parent looking for pictures and presentations. 

Beverly Morgan is an IBCLC who wrote an exhaustive article full of tons of links, and she shares her own experience of revision as an adult. 

Dr. Brian Palmer made extensive contributions to the world of breastfeeding and infant oral health. His website addresses ties, palate and jaw development, caries, and more. 

International Lactation Consultant Association is the best place to find an IBCLC who can assess and evaluate a breastfeeding dyad's situation. 

International Affiliation of Tongue-Tie Professionals (IATP) is the leading professional organization, and IATP offers resources for parents as well.

In April I gave a presentation to a group of healthcare professionals on the topic of tongue-tie. It was important for me to see where moms were getting the initial idea there might be a tie -- the diagnosing and treating was not part of this poll. 

What impressed me about this is, moms are generally the ones who figure this out. There is wisdom in mothering! Before the first book was written or the first study published, there were mothers -- sharing stories, knowledge, and experience with the next generations. That has not changed simply because information is easier to access. Follow your instincts!

I knew I wanted a doula even before I became pregnant. The support that comes from being surrounded by a community of supportive women is unparalleled. But just who would that person be? Could that person be the one woman who has been there my entire life?

I knew my mother has long aspired to become a doula, to support mothers in birth. Not long after I told her we were expecting I asked the big question, will you be my doula? I was nervous and excited. She was too. She signed up for training right away.

The day of my son’s arrival finally came. I called her in the wee hours of the morning to let her know that this was the day. She drove three hours from her home to mine to be there for me. She came prepared, ready to put her newfound knowledge to work. I had been laboring for hours through the night by myself, pacing back and forth. It was so nice to have a familiar hand to hold to keep me grounded.

When I was ready to go to my birthing suite, to get the relief of the big Jacuzzi tub, she helped me call my midwife and made sure all of my bags were ready. She packed up the cars along with my husband and followed behind us as he drove us to the hospital.

When we arrive in our room, she carefully and quietly surveys the room to make sure my birth plan wishes are being honored. She assists me in communicating with the nurses as the contractions already a couple minutes apart come and go. We begin to move around the room with a rhythm. She follows me wherever I go. Holds my hand, offers her body for support. She runs her fingers through my hair or just sits quietly as I rest when my body allows.

As the day wears on I know she must be exhausted, her body must be tiring. But she never shows it. She just keeps offering herself to me. She supports me as only a mother can.

The following are the words I wrote about our experience just days after my son’s birth:

“How can someone perform so many roles and perform them so well, so seamlessly? Every touch radiated love and care. Every look raised my confidence. When I thought I couldn't possibly go any further, her presence told me I could. She did it. I can do it. She is here to support me in every moment. She is here through every contraction. She is here through every second of pure exhaustion. She is nervous and anxious but she never shows it. She is strong. She is strong for me. She labors with me. She pushes me through. She shares in my joy. She shares in my love. Our bond only grows stronger. I now know how she feels, what being a mother really means. It can't be described, only felt, only lived.”

I can’t imagine my son’s birth without her. I can’t imagine becoming a mother without my own by my side. It didn’t stop there, though. She stayed with me through the toughest time of my life. She had planned to stay a few days while we settled in to our new routine. But something wasn’t right. My son wasn’t nursing and he was losing weight rapidly.

She urged me to see a lactation consultant and went with me. At the consult he was weighed and I was told I should see his doctor immediately. The lactation consultant made an appointment for us and we went straight there. After the visit with a doctor we ended up in the NICU. They had to transport him to another hospital when he became unstable. My mother, my doula, held me up as I walked down the hallway and out the doors of the hospital without my son.

This was the hardest moment of my life. I felt like my everything had been ripped from me. She drove me to the NICU hospital and held me as we waited to see my son again. She held me in the NICU room as I stood there staring at my son hooked up to machines. She held me and her grandson while I struggled to nurse him. She was there through it all. 

They made her leave after hours. But as soon as those visiting hours started she was there. Even waiting outside the door for the clock to strike so she could come give me the support I so desperately waited for through the long nights. 

After we returned home so did she. I was so sad to see her go. But I knew with her encouragement and love that she had given me over the last few days that I could do it. I could be the mother I needed to be. And of course I could call on her during those quiet moments of doubt when only she would understand what I was going through. For only she was there to feel it all with me.

When my daughter asked me to be her Doula, I was so honored and excited. Not only was I going to be able to finally be a doula, something I had only dreamt of, I was going to be there to assist my daughter. I better get to work, I thought. I had to learn all I could. I wanted to be at my best, after all, this was MY daughter and MY grandson. To say I was overwhelmed is an understatement. I did my best to listen to my trainers. I also read every book I could get my hands on. One of the most important things I think I did was to talk to other Doulas and Midwives about their experience.

The day finally came. The three-hour drive in the wee hours of the morning was the longest ride of my life. I was on the hands-free phone with her most of the time, checking contractions, praying that it was God’s will for me to be there when she needed me. As I arrived, we went over her home plans and realized she was in active stage and could get some relief from the big Jacuzzi in the birthing suite, so off we all went. On the way to the hospital I thought, am I doing this right, am I saying the right things? As we arrived I went over her birth plan. Was the room dark enough, was it quiet enough? Making sure every support staff had copy of her plan.

Her labor was long and at sometimes it seemed that way. In other ways it seemed to go by so quickly. She received relief from the Jacuzzi. Finally I was able to see my daughter (yes, she is my daughter and client all at once, but my heart said daughter at this moment) calm and relaxed. I remember running my fingers through her hair as I did when she was young, thinking my baby is having her own baby. Holding her hand as we had millions of times before, but this time was different. 

The hours went by and I assisted her in about every laboring/pushing position you could think of (if you’re a doula you know what I mean). She was exhausted, I was exhausted, but she pushed through. And then finally her baby crowned, and she pushed through the head. Part of her birth plan was that she had wanted to be able to touch the head and that she wanted her baby to hear her voice first. Her midwife placed her hand on the baby’s head and with a finger to my lips I reminded everyone to be silent (what my daughter didn’t know is, that she had pushed the baby's head all the way out and the baby was looking at us with great wonderment). It seemed like hours as we all waited patiently in silence. Then when she was ready, the last push, and he was here!

I can’t explain the emotions I was going through. The love that I had for my daughter at that moment was like no other time before, the bond that I already felt for my grandson, and the pure physical exhaustion. I was a Mother, a Nana, and a Doula.

Yesterday I decided to check in my 14 year old's mouth again to see if any changes had come from his frenotomy back in September. His teeth don't look that different, but in person, I can tell there was a larger space at the gumline than there is now. The tongue extension right after the procedure speaks volumes, though. This was a child who breastfed easily until he was 4 years old, but I believe he had a host of other issues, including delayed ability to eat solids, extreme pickiness that still affects him today (it makes sense to me that he ate what his mouth could handle, so certain textures and foods were avoided), and caps on many teeth at 18 months of age, and of course the eventual pulling of his teeth in.

Did you know upper-lip ties are frequently present when there is a tongue tie? And either or both may make breastfeeding difficult? If you suspect a tongue-tie, flip the lip! The presence of a thick labial frenulum could indicate the need to check under the tongue.

-For real-life help, contact an IBCLC in your area who has experience with lip and tongue restrictions, for a thorough history and assessment.
-Want virtual support and help? Visit Tongue Tie Babies Support Group.
-To see how upper lip ties look, check out Dr. Kotlow's handy chart (scroll to page 22).
-Don't miss Dr. Ghaheri's excellent article explaining how upper lip ties can affect breastfeeding.

The upper lip ideally fans out over the breast in order to help the baby grasp and latch deeply. Have you thought about that before? Babies hold the breast with only their mouths, although they often place their cute little hands on either side while nursing -- but those hands aren't holding the breast, their mouths are. Lip ties frequently come with tongue ties, and if you have been told your baby has one, make sure your provider knows how to check for the other. The baby pictured here was not able to nurse despite his mama's best efforts (she extended pumped for him), and at almost 2 years of age, his lip tie was noticed.

For more information on upper lip ties:

Advocates for Tongue-Tie Education's Fast Facts

Tell Me About Tongue Ties! Breastfeeding USA

Diagnosing and Understanding the Maxillary Lip-tie as it Relates to Breastfeeding, Dr. Lawrence Kotlow

Back in June when we took Ezra to see Dr. Jesse, it was just my husband, Ezra, and I. I had this picture on my phone, and on a whim, I shared it with Dr. Jesse to show the array of palates and tongues we had left at home:

"You see this here?" he pointed to my (then) 13 year old's picture, "His tongue-tie is pulling his bottom two teeth in." 

Now after my discovery of Ezra's mouth, and then our science project of comparing the other kids via pictures, I was amazed to see Jacob had a tongue-tie. He nursed with ease until the day he quit on his 4th birthday; well, I should say, after his stint in the NICU for 2 weeks, plus a couple of days figuring things out in our own time and space out of the hospital, he nursed with ease. I thought that was it, end of story -- nursing went well, so we didn't need to worry about it now. But I had before noticed in his otherwise lovely mouth of mostly-straight teeth, those two troublesome bottom guys...

In hindsight, a tongue like that could have caused a few issues we noticed earlier but were clueless about. Jacob was late to start solids. I offered him rice cereal at four months (it is important to know rice cereal isn't the best first food for babies, I was following mainstream guidelines and assuming since it was marketed for babies, it was best for babies; for more info about that, read here). He gagged so I figured he wasn't ready (again, I was uninformed and looking at the calendar and not the baby when determining if he was ready for food). I would wait a couple weeks and try again; same response with additional behaviors such as coughing, tongue thrust, clamping his mouth shut, and turning his head away. After a few more attempts, I lost interest and let my little sister (then 12 years old) eat it all. When Jacob was 9 months old (and still had no real solids experience) we were eating at our favourite Mexican restaurant. Jacob was large -- 9 pounds, 8 ounces at birth, 20 pounds at 4 months, 30 pounds by a year -- and because of that, we often placed him in the high chair while we dined to keep him at our level and engaged. He never acted interested in food, though. This particular night, he was madly waving his arms and shouting at us, so I offered him a bite of refried beans. Surprisingly, he took the food into his mouth, kept it in, swallowed, and wanted more! We were excited, but it still wasn't full-speed ahead with food -- he didn't really start eating food until about 14 months. 

Tongue-tied babies can often be slow to eat solids or have other food issues, but I just assumed he wasn't ready and I didn't worry due to his size. I do believe Jacob limited himself to foods he could easily eat and swallow and this shaped his preferences -- he is still a picky eater, and I fully attribute that to his anatomical make-up and how he compensated to ensure he didn't choke or suffer other discomforts while eating.

The second sign of how he was being affected by his tongue was the fact that he had extensive decay on his top teeth, necessitating caps at 18 months old. Having a tongue that doesn't move in a full range can cause decay, as the tongue isn't able to move between the teeth and the lips up at the gumline to sweep food out. Coupled with an upper lip tie (restricted upper lip), pockets can form and food and bacteria can become trapped, thereby causing decay despite the best oral hygiene practices. Again, at the time we thought it was a fluke, genetic thing, especially since he hadn't started solids until later. Now I see it makes sense. In light of his history, I recently scoured all the pictures I have of him to try and find evidence of his tongue-tie as a baby -- this is all I have come up with:

Ties, like black holes, continue to exert that force on the mouth and the teeth if they aren't resolved or released; case-in-point: my husband's parents spent thousands of dollars on orthodontics for him, to only have his bottom teeth move once the braces came off and stopped holding the teeth in proper alignment. I could further prove this with a picture, but my husband doesn't readily allow me to share the inner workings of his body on the internet :). 

We decided to take yet another trip to see Dr. Jesse and have Jacob's tie revised. We made an overnight trip out of it, with an adventure to the La Brea Tar Pits attached.

Dr. Jesse welcomed our whole entourage into the treatment room. While we waited, he ran in to get the laser and said, wheeling it away, "Someone has a canker sore that's needs zapping!" and left, happy to remove this thorn in a patient's mouth.

Dr. Jesse came back in to greet us, look in the other boys' mouths, and then get Jacob seated in the chair. He visually and digitally assessed Jacob's tongue function, saw there was no upper lip tie, and explained what he felt we should do for optimal restriction release. Jacob received a numbing shot that needed a few minutes to take effect, and we waited and chatted. 

Since I held Ezra during the last procedure, it was Brad's turn to hold Jacob (just kidding -- Jacob is 6" tall and wears a 13 shoe). I did say that, though, and it got a good chuckle. What I intended to state was, since I held Ezra and wasn't able to watch the procedure in real time, I stood close to Dr. Jesse's shoulder to get full view of the lasering. It makes sense, but I wasn't quite prepared, that it took about 5 soild minutes to keep swiping the laser over, and over, and over the frenulum. Dr. Jesse would then readjust, regrip, and reapply the laser; soon I realized I didn't need to watch the whole thing. The other children were curious, and Dr. Jesse's assistant invited them over to both have a turn.    

After the procedure, Dr. Jesse made sure all the boys (minus Ezra) received popsicles. We took care of the billing ($80), and bid Dr. Jesse farewell. We went in search of lunch and ended up at BJ's Brewhouse. Jacob ordered pizza and ate like a champ, mostly...but as he neared the end of his pizza, his eating got slower. Finally he pushed the last bit away and said he was done. I looked at him an realized he was white as a sheet! That's when it hit me:  I should have given him ibuprofen before walking out of Dr. Jesse's office! I let the pain come at full-force as the numbing shot and laser affects wore off. I quickly offered him some analgesics and we hit the road toward LA.

We stayed in a hotel, and Jacob and I found a Target to get some provisions (popcorn, hot chocolate, snacks). I threw some Anbesol into the cart, hoping it might help. Jacob threw some popsicles in for good measure. Back at the room, we tried the Anbesol (it stung mightily -- he went and washed it out!), and he decided to keep up with the ibuprofen and popsicles. He had a hard time sleeping that night, but we were away from home, and the distractions were minimal.

The next morning his mouth really hurt, but he was able to drink some hot chocolate with his brothers: 

We headed off for the day and had a great time at the tar pits. Jacob did experience pain intermittently, and we kept up with the ibuprofen (see a theme here?). For lunch we went to the Cheesecake Kitchen. Jacob ate a hamburger okay, and then the five of us shared three pieces of cheesecake (he had no trouble with that!).

For the next few days, his mouth hurt. Looking back now and reading other adults' accounts of their revisions, I wonder if we could have dissected a bit more what the pain felt like to get to the root of what might have been causing that sensation. As in childbirth, when you throw all the "pain" together in bucket, it is read as PAIN, but when you break down where the sensation is coming from it not only makes it easier to cope with, it helps us to know why it's there. I am sure he was feeling soreness at the site, but was he also feeling tenderness as his tongue moved in ways it never before was able? Was any of that the after-effects of tensing during the procedure, which caused lactic acid build up he was feeling now? Referred pain signals to areas that weren't even affected? All we knew was, he called it pain, and we treated it as such. There is science behind controlling pain for speedier healing, so I am not opposed to doing what works for him. Being that he is the size of a grown man, his frenulum was thicker and required more time to release.

I am trying to get him to write up his experience in his own words, but that may take some bribery on my part, or extra credit on his English teacher's part. But who knows, maybe it'll turn up and you can read how he felt about being tongue-tied and then released?