Guiding informed decision making about tongue-tie revision

In the service industry, the customer is always right. In lactation, ‘Mother knows best’. 

Lauren Zemaitis MA, CCC-SLP, is a pediatric speech pathologist who specializes in infant, toddler and school-aged children with feeding disorders. Her son– now three years old– was diagnosed with tongue-tie by a hospital-based IBCLC when he was about one day old. 

“It is still such a vivid interaction in my mind,” Zemaitis begins. 

“We had some difficulty latching within the first 24 hours. I had some [birth] complications so I was a little groggy and the two of us were just trying to figure [breastfeeding] out,” she remembers. 

“The nurses were having trouble helping me, so an IBCLC came in and was very aggressive talking at me through the latching process. She shoved her finger into my son’s mouth while he was crying and told me he had ties and said, ‘You won’t have a good breastfeeding journey. These have to get revised before you leave the hospital,’” Zemaitis continues.

“I was just like, What?” she remembers, still affected by lingering medication. 

Throughout the rest of the day she and her son laid skin-to-skin, and he latched. 

The following morning, the lactation consultant returned. She inquired about Zemaitis’s conversation with their pediatrician the night before. 

Zemaitis explains: 

“She was very aggressive again and said, ‘I know the ped came in last night. Did you talk to him about what I said? I said we did talk with the ped and right now we don’t want to pursue a revision, he’s not even 72 hours old. She said, ‘Well I just still don’t think this going to work for you.’ I explained what I do [for a profession] and she said, ‘Oh, so you know this is going to affect his feeding skills and speech development.’ I finally said that no we’re not going to do this, that I want to see where this breastfeeding journey is going to go. She said, “Fine” and left the room.” 

From that point on, Zemaitis often doubted her ability to breastfeed her baby. 

“The specialist set me up to think I wasn’t going to be successful,” she says. 

Even so, Zemaitis and her baby went on to breastfeed for over a year. 

Their story is a great reminder that we look to lactation care providers (or any health care provider) for guidance, not dictation. Professionals are positioned to help us make informed decisions. Ultimately, parents are their children’s health authorities, and in this case and in many others, Mother knows best. 

Their story is also a powerful anecdote about hotly debated tongue-tie diagnoses and treatments. 

Zemaitis considers tongue-tie a “buzz word” among some professionals meaning it’s an overused term, and it’s being over-diagnosed. 

She points out a few concerns she has. 

“Between professionals, there’s a lot of gray area; one person might say it’s a true, very taught tongue tie that needs immediate revision and someone else may say we just need to do something else like working through the re-latching process or sucking skills,” she explains. 

She also worries that pointing out tongue ties (especially if done in the manner she’d experienced personally) might plot doubt in moms. 

“The doubt continues to get bigger and bigger in terms of their emotions around it and then when something goes wrong, or different than they thought it would, they immediately doubt themselves and their decision around tongue revisions,” she goes on.

What’s more, Zemaitis notices that many revisions are being performed around three to four months of age, at which point babies have established motor patterns. Sometimes, a revision can disrupt those patterns and has to relearn them. 

Tongue-tie revisions, which sometimes sound as benign as clipping one’s fingernails, can be simple, but they can also require a more involved surgery, cutting into muscle and requiring extensive pre and post exercise and follow up care.  Zemaitis points out that parents can be apprehensive to touch the revision site to perform this care.  

When tongue tie is suspected, she and her colleagues look for a functional deficit like limited tongue mobility and/or strength and the impact on feeding development and skills, not solely the structure of the mouth. 

They’ve found that things like suck training, repositioning at the breast, and counseling mothers to allow the baby to latch rather than trying to “control” the nipple and baby’s movement can be effective tools before referral for revision is suggested. 

Through personal experience and after completing the Lactation Counselor Training Course (LCTC), Zemaitis centers her work in good counseling. 

“I think the counseling piece is something that we all really strive to continue to do better,” she says. “The counseling piece in the training was really valuable. I learned a lot by doing the small group projects and working with other professionals from other settings; how can we all do better with the active listening piece?” 

Zemaitis has the opportunity to uplift and celebrate her clients in their natural environment when she’s doing home visits. She particularly loves working with families with premature and medically complex babies. 

She explains that one of these families biggest challenges is transitioning from hospital to home and feeling like they have to start back at square one with their infant’s care. 

Zemaitis considers some of her biggest successes when she sees babies go from being completely reliant on tube feeding to becoming oral eaters. She and her colleagues are inspired by the work the children and their parents go through to ultimately “trust food”. 

“[Parents] thank us,” she begins. “We say, it’s because of you. We are guiding you. You are making the choices for your children.”