Tongue Tie and Social Media: Concerning and Confusing!

This post was co-written by Renee Beebe and sister IBCLC Jessica Altemara. Thank you Jessica for your inspiration and professionalism! 

20140828_095301Some lactation professionals have been trying to address a lack of understanding regarding tongue ties and lip ties for many years. They wanted it better known that tethered oral tissue (term used to refer to all types of “ties”) can negatively impact breastfeeding. But now, with the advent of instant-access social media, we are seeing a trend that is a bit disturbing to these same advocates. We see mothers diagnosing their babies’ tongue ties based on images they see on a Facebook group. We see professionals saying to mothers: “That baby needs a frenotomy,” based on a picture posted to Facebook. 

What’s even more disturbing is the professional lack of agreement about tethered oral tissue. Some medical professionals seem to be clipping everything they see, attributing every possible issue to tongue tie. Others claim that this is all a fad—that it’s normal to have frenulae under the tongue and lip and nothing needs ever to be done about it. It’s even more confusing for parents to make choices when professionals are so polarized on the issue. Where does the truth lie?! To whom can confused parents turn?

Here’s the thing. You can’t just look at a picture or even at a live baby and know for certain that she is tongue tied. Appearance is one piece of the picture. The most important piece is in the function—in other words, how the tongue moves. The tongue does not exist in isolation. It interacts with the rest of the body to eat, drink, swallow, clean teeth, etc. It’s complicated. It takes a great deal of training to accurately assess tongue and lip ties.

When a nursing mother finds herself concerned that her baby may be tongue tied, she needs to see an expert on tongue tie. The evaluation takes time. No one worth their salt in tongue tie will ID a restriction by simple physical exam. It involves seeing a baby breastfeed or bottle feed, getting a full picture of all symptoms, and looking at the physical from several angles. Sometimes it takes even more than one visit. There are various tools and techniques for tongue tie evaluation, each of them with different strengths and weaknesses. No tool is a replacement for individualized evaluation of the whole picture by an expert.

An expert knows how to combine function with the physical and make an accurate assessment. An expert will rule out basics (like bad latch or positioning) as well as other advanced issues (like structure or low muscle tone), do a physical exam, and put all the pieces together for a big-picture diagnosis. An IBCLC who has invested in an education about tongue tie is perfectly suited for this task. The IBCLC can help identify a tongue tie, refer to appropriate professionals for the release of the tether and recommend talented body workers. A well-trained IBCLC is exactly who can hold the hand of the nursing mother as she navigates this journey!

Here’s a real life example from Renee: I saw a baby in my practice who was not gaining weight and breastfeeding was difficult. His Dr. happens to be a skilled frenotomy provider in my area. Dr. Smith had examined the baby and felt that the frenulum was not interfering with breastfeeding. I felt that the frenulum was part of the problem, but I also noticed tight muscles in the baby’s upper body. The mom and I worked on some things together that seemed to help for awhile. Baby also had 3 sessions of expert cranial sacral therapy before they came back to see me concerned about continuing breastfeeding difficulties. Upon examination of the baby and noticing that the muscular issues had resolved, I suggested she go back to Dr. Smith and have him check the frenulum again. This time he decided to do a frenotomy and mom and baby are doing much better. No one was “wrong” in this scenario. We were working together on a complicated issue and everyone involved understood that it was multi-faceted. This is how it’s supposed to work!

Lactation professionals who are well versed in tongue tie are concerned about the over-simplification of a complex issue. We are concerned about the difficulties that parents face when they suspect their baby is “tied.” We are concerned about the lack of agreement among medical professionals. And most of all we are concerned every time we hear yet another story from a new mother who recounts her breastfeeding journey that is fraught with conflicting information and unnecessary struggles.

People addressing tongue tie who are not well-educated in tongue tie evaluation is the problem. It is not over-diagnosis by the tongue tie “fanatics”, nor is it under diagnosis by the ignorant. As long as people who are not up to date and knowledgable about current practices are speaking authoritatively on tongue tie there will be babies improperly diagnosed and prescribed incomplete care plans.

It is a good thing that the concept of tethered oral tissue is growing in awareness. Mothers now know that tongue and lip ties can cause breastfeeding difficulties and other problems. They are rightfully insisting on answers. Social media can be helpful, but it cannot pull all the pieces together for a full evaluation—let alone an individualized care plan. Parents and babies need an expert to guide them through the journey of tongue tie—including connecting them to other experts who can do revisions and appropriate body work. An IBCLC well-versed in tongue tie evaluation is the professional best suited for this task, since IBCLC’s are the only health care professional who consider the mother/baby dyad as a unit for the duration of breastfeeding. It is then and only then that mothers and babies will really have their needs met.

See Also, “My Baby is Tongue Tied?”

Renee is an IBCLC in Seattle, Washington who has been identifying tongue ties for over 17 years. She is member of the International Association of Tongue Tie Professionals (IATP) and is a GOLD lactation speaker. Her latest presentation was titled, “The Emotional Roller Coaster of Tongue Tie.”

Jessica is an IBCLC in the Triangle area of North Carolina who has specialized in tongue tie for 9 years by educating other professionals, leading TT support groups, and founding a regional tongue tie clinic. She is a member and conference supervisor of IATP.  She can be reached at Www.blissatthebreast.com

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