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.”

Never underestimate a mother

This photograph brings the kind of smile to my face that lifts my ears up several millimeters and presses the tops of my cheeks into my bottom lashes. The athletes are so expressive, I almost squeal in excitement as if I’ve just witnessed their victory. 

The story behind the photo is summarized by Ann-Derrick Gaillot in 10 Women’s Sports Stories That Would Make Great Films:

“When the winners of the women’s 4x100m relay at the 1992 Summer Olympics in Barcelona were announced, no one was more thrilled to win than the bronze medalist team from Nigeria. Teammates Beatrice Utondu, Christy Opara-Thompson, Mary Onyali, and Faith Idehen were relative outsiders in the international running scene and were not expected to stack up against powerhouses like France and the United States. Though injury and traditional cultural gender norms would threaten their chances of competing in those Olympics at all, they would leave Barcelona that summer as the first Nigerian women to win Olympic medals. Onyali eventually went on to become one of Nigeria’s most successful runners, appearing at the Olympics four more times.”  

Underdog stories are always inspiring, and they’re happening every day when a woman becomes a mother. 

That’s Nurse-Family Partnership supervisor in Buffalo, N.Y. Daynell Rowell-Stephens’s MS, RN message.

“Stay open no matter what the circumstances the mother may be going through,” Rowell-Stephens offers. “[Mothers] have the ability and the capability to be the best moms, to flourish. Never underestimate a mother because motherhood drives women to be the best.”

Photo by Sai De Silva on Unsplash

She continues, “Support moms no matter what; whether it’s drug use or homelessness– I’ve seen it– motherhood really launches them into directions they never imagined they could go into.” 

Rowell-Stephens and her colleague’s agency is just over a year old, and in that short time, they’ve managed to make a great impact on the lives of mothers and their new families. 

“We are so excited about all that we are doing,” Rowell-Stephens says. 

It’s well-documented that people of color have less access to health care resources and are faced with structural barriers that inhibit good health outcomes. Amani Echols points out some of those barriers in The Challenges of Breastfeeding as a Black Person:

  • “Many Black people work, and breastfeeding at work is hard…
  • Black neighborhoods are also lacking in hospital practices supporting breastfeeding…
  • The societal stigma of breastfeeding is heightened for Black and brown people.” 

These are big gaps to fill, but Rowell-Stephens and her team readily take on the challenge.

They make sure their clients receive proper prenatal care by connecting them with various health care providers including midwives and doulas. They provide nutrition counseling. They help them secure housing and jobs and continued education. They impact decisions about cigarette and drug use. They support them through mental health crises. They educate on how to navigate different stressors. They support healthy infant feeding and bonding.

“All of the nurses on the team are very passionate about breastfeeding  so we love to see so many of our moms interested in learning to be successful at breastfeeding,” Rowell-Stephens comments. 

She’s the most recent member on her team to complete the Lactation Counselor Training Course (LCTC). She says the experience was “quite eye-opening.” 

“It is really going to change my practice overall,” she says. 

Maybe most importantly, the team teaches their clients how to healthfully engage with their children. 

“It makes me so excited to see these girls change their whole outlook on life,” Rowell-Stephens says of her clients when they become mothers. 

She celebrates the story of one of her clients who set a personal goal to complete a rehabilitation program and acquire a living place before the birth of her baby. 

“She accomplished that!” Rowell-Stephens reports.

Not long after, the mother’s roommate was using drugs in the home. 

“Her motherly instinct kicked in and she knew she needed to get out of that environment,” Rowell-Stephens begins. “She recently found another apartment and she’s providing for her child.”

Rowell-Stephens goes on, “She’s taken what might seem like very small steps, but for her, as we look back at just this past 9 months, she has done so many things. She has changed the world around her.”