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.”

Helping families flourish in southeastern Alaska

As a young child, Jasmine Esmay, RNC-OB, CLC, now a nurse at a Baby-Friendly critical access hospital in southeastern Alaska, watched a mare birth her foal. 

Esmay was struck by the “reverent atmosphere”. The horse has fresh hay and water. Calm and quiet hushed over the scene. 

“I was in awe of the whole process,” she says, making the connection early on that we, too, are mammals.

Most young children play house at some point, but I was never interested in pretending to cook or playing house,” Esmay shares. “I wanted all my friends to pretend they were in labor and I was the midwife, much to the dismay, I think, of their parents.”

Then when Esmay was 17, she was invited to attend the hospital birth of a friend she babysat for. 

“Again, I was in awe of the power and strength and miracle of new life,” she says. 

Her personal birth stories further shaped her passion and work within maternal child health, fully realizing the importance of evidence-based practice. These stories were a sharp contrast to the gentle, supported births she had witnessed, and she began to understand that how women experience birth can influence outcomes such as bonding, breastfeeding rates and  postpartum depression occurrence. Early on in her work, she realized the significance of a calm, patient-centered approach. 

Latching babies or empowering parents 

Esmay eventually volunteered with WIC, making house calls and inviting others to her home to help with breastfeeding whenever she could. Since 2008, she’s been working solely as an OB nurse. 

“…It seemed wherever I was working in an obstetric unit people would always say “Go find Jasmine, she can get any baby to latch!’” she shares. 

In 2017, she completed the Lactation Counselor Training Course (LCTC)

“What [our instructors] taught me through that course was to put my hands in my pockets and take in the entire picture, and then to help the breastfeeding dyad to find their own ways to be comfortable and successful with breastfeeding,” she explains. 

“They really stressed starting newborns with laid back positions, to encourage instinctual feeding behaviors, and to help new parents be comfortable and confident in their ability to breastfeed,” Esmay continues. “It was so hard those first few months to trust the process. I had to learn that my method of so-called helping was really not helpful.”

Esmay found it helpful to remind herself of the words of Cindy Turner-Maffei: “You may be able to get a baby to latch, but is it teaching the parents or empowering the parents so that when they go home, breastfeeding is successful?” 

Over time, Esmay says she came to realize that confidence is half the battle.

“I’ve heard over and over ‘I didn’t think I could do it’ or ‘I couldn’t have done it without all the help and support’,” she reports. “It’s nice to know that we not only encourage breastfeeding, but that we give people the tools they need to really succeed at breastfeeding and enjoy it. I really hope that those feelings of success and empowerment reach into the rest of parenting and pass down into generations.”

She’s noticed too that parents prefer a hands-off approach most of the time. 

“As this approach was implemented, I began to see less parents coming back supplementing or with nipple pain or other breastfeeding issues,” she reports. “It is very rewarding to see the parents’ confidence grow, and see how that affects bonding and the integration of the newborn into the family.” 

Expanding lactation care support 

Esmay plans to take the IBCLC exam in April, a process she’s been working toward for five years. 

“I can honestly say that out of all the trainings and books and lectures and conferences I attended, the training I received through Healthy Children Project changed my practice the most,” she comments. 

Esmay was recently honored as a member of USLCA’s advisory board.

“My hope is that through knowledge and idea sharing we can think outside the box on ways to expand lactation support and education to marginalized populations,” she reflects on her new role. 

Esmay shares that she has conflicting thoughts regarding the exclusive use of IBCLC credentialing for “the gold standard” of lactation care. 

She explains: “It is important to recognize credentials, and licensing will help with getting lactation care reimbursed, but I also know from experience how expensive it is to obtain and maintain. The reality is that obtaining an IBCLC at this point is just not possible in many rural and marginalized populations. 

I think more focus should be on training all healthcare workers in normal breastfeeding support and the importance of breastfeeding. Statistically breastfeeding is just as important to overall health as teaching cardiac wellness and cancer screening. The focus should be on breastfeeding as a normal part of maternal child health, with referrals to experienced lactation care professionals when there are complicated feeding issues.” 

Barriers and triumphs 

In her work today at the critical access hospital, Esmay and her colleagues serve 15 remote communities. Their hospital was the first tribal affiliated hospital in the state to receive Baby-Friendly status. 

Esmay says their patients are plagued by many of the same barriers as those in the rest of the nation; namely, limited access to evidence-based breastfeeding support, physical distance and travel barriers for perinatal care, breastfeeding not being the socially acceptable norm, abysmal parental leave, little or no workplace pumping accommodations and/or childcare. 

“I think our biggest barrier though is in the current medical model of care where there is a lack of continued support throughout the postpartum period,” she says. “It doesn’t make sense to have 10 plus prenatal visits, and then only one postpartum follow up 4 to 6 weeks after a baby is born.” 

Adopting the midwifery model of care could offer many solutions in regard to postnatal care, she adds. 

Location lends itself to some challenges too. 

“It seems the very nature of where I live lends itself to always being a bit understaffed. Living on an island has its challenges and some of the community is transient by nature due to seasonal work or contract work.

 I think it is well known that healthcare in general is a very mentally and physically challenging calling. For obstetric care in general, I think that is why it is so important to get more feet on the ground for lactation support. If we can encourage routine breastfeeding education and training to all women and children’s nurses and providers, that will lessen the burden and improve access to breastfeeding support.

In my opinion, if you work anywhere in healthcare, but especially maternal child health, then basic breastfeeding knowledge should be the standard, not the exception. There are always those special feeding needs that will require a higher level of care, but every women’s and children’s healthcare provider should know what normal breastfeeding patterns look like, how to support a breastfeeding dyad and how to spot problems.”

Despite the aforementioned barriers, Esmay and her fellow colleagues are unrelenting in their service. The team offers a variety of breastfeeding support programs including:

    • Postpartum phone call 7 to 10 days after birth as a safety net between 3 to 5 day check and 2 week newborn follow up
    • Free lactation clinic 
    • Monthly peer breastfeeding support group 

Alaska scores quite well on their breastfeeding rates compared to U.S. national averages. Esmay attributes this in part to necessity. 

“Many of the communities in southeast Alaska are very remote and cannot always rely on shipments of food or formula to survive,” she explains. “I think it speaks to the importance of family-centered communities and the knowledge sharing that happens in extended families.”

Community is strong in her area, and there’s strong community awareness of the state of maternal child health in America. 

Esmay brings attention to community gatherings like that of a group called NEST (Nurture, Empower, Support, Transform). She recently partnered with the Alaska Breastfeeding Coalition and the hospital to implement a “Breastfeeding Welcome Here” campaign for area businesses.

Encouraging trauma informed care 

While Alaska is making a difference with small changes, Esmay sheds light on an area that needs improvement: trauma informed care.

“The statistics in Alaska for women experiencing trauma are astronomical,” she begins. “Thirty-seven percent of women in Alaska have been victims of sexual violence– that rate goes to 50 percent if you are an Alaskan Native Woman– and in some areas of the state that number can be more than 90 percent. 

When women who have survived sexual violence give birth, there are triggers. Often the traumatized person is not expecting these triggers. How care is given during prenatal visits and throughout the birth process can affect how a labor progresses, how parents bond and how they view themselves as new parents. 

It can make the difference between a healing and empowering experience or becoming a victim of violence once again. If care is taken adhering to the principles of trauma informed care, there will be better birth outcomes, like less postpartum depression and a higher rate of breastfeeding success. 

Ultimately it will lead to healthier families, and that’s really the long term goal of healthcare for women and children.” 

Esmay recommends When Survivors Give Birth by Penny Simkin and Phyllis Klaus to help us understand how to best care for the pregnant person who has experienced trauma. 

Esmay shares a few closing thoughts:

    • Approach breastfeeding from a preventative healthcare point of view. A study reported in the Surgeon General’s Call to Action found that if 90% of U.S. families followed guidelines to breastfeeding exclusively for six months, the United States would save $13 billion annually from reduced direct medical and indirect costs and the cost of premature death.  
    • Populations most affected by dangerous diseases have the least access to breastfeeding support and education. 
    • Breastfeeding is a global health issue of the highest importance. Corporate healthcare and governments need to invest as much money and energy as possible into promoting breastfeeding. 
    • We need human donor milk available in every hospital, we need equitable and affordable access to breastfeeding support, and we need the U.S. to uphold the WHO code of marketing to prevent formula companies from preying on vulnerable populations. We need the organizations that support breastfeeding to brainstorm new ways to improve education and access for all. 
    • Really the answer to world peace could be in breastfeeding, but that’s a topic for another day.