If you’re the parent of a newborn, chances are you’ve heard the term “tongue‐tie” from another parent who experienced pain while breastfeeding and whose baby struggled to latch, was subsequently diagnosed with a too-tight lingual frenulum, then underwent minor surgery – called a frenotomy – to release it.
Or perhaps that struggling someone was you or your baby. Whatever the case, the terms tongue tie and frenotomy have arisen in the new parent vocabulary in the past decade.
According to the Cochrane Database of Systematic Reviews, tongue tie is present in 4% to 11% of newborns. In cases where it causes extreme breastfeeding pain (including severe nipple damage) or impedes a baby’s transfer of milk from the breast, lactation experts and pediatricians agree that releasing the lingual frenulum — that tiny slip of connective tissue that attaches beneath and near the tip of the tongue — can help both moms and babies. However, they say most tongue ties do not impact breastfeeding and do not need intervention. Even so, the rates of surgical intervention are dramatically rising, according to a recent New York Times investigation.
Addressing severe breastfeeding issues
“If a parent is trying to breastfeed and there is nipple pain and damage – and it can be severe and horrible, I’ve seen it – or if a baby is not gaining weight, we go looking for a tongue tie. It’s not always part of a routine exam. If we find one in these cases, frenotomy can make a difference,” says Ginna Wall, RN, MN, ICBLC, a retired pediatric nurse of 40 years and founder of the lactation program at UW Medicine. “However, I agree that we are seeing too many frenotomies. Unless it’s causing a problem with breastfeeding, it’s usually unnecessary. That’s my bottom line.” She adds that surger is not the only way to treat tongue tie.
“Research shows that a lactation expert who received special training can help work with parents to fix nursing positioning and latch, and that sometimes resolves the problems [even with a tongue tie],” says Wall. “In New Zealand, they use a standardized tool to assess tongue tie. If there’s a score below four on that assessment, referring for a release is appropriate. They’re not supposed to refer if the scores are above four, and they have had significantly reduced unnecessary procedures over two years.”
While quality research is lacking on Craniosacral Therapy to help with tongue tie-related breastfeeding issues, parents are often referred for CST.
Says Wall: “It’s not evidence-based, but boy, do many parents and many professionals swear by it.” She notes that insurance companies don’t cover CST, and parents end up paying substantial sums out-of-pocket for weekly sessions.
New visual guide for parents
What does a tongue tie look like? And what do parents need to know when a frenotomy is deemed necessary? Seattle lactation consultant Renee Beebe, IBCLC, M.Ed, has spent the last four-plus years researching and writing a book on the topic. Her self-published “Fit To Be Tied: A Visual Resource for Parents,” a photo-centric guide,was released in December and sat in the top 10 books list in Amazon’s Nursing Pediatrics section in January.
The guide includes written descriptions and detailed photographs explaining how to look for signs of tongue tie, how feedings may be impacted, how ties are commonly treated, when — and when not—to choose a surgical intervention, and how to select a medical provider.
So far, lactation consultants across the country are raving about Beebe’s handbook:
New York midwife Lisa Paladino CNM, IBCLC, called the book a “must-read for any parent wondering about tongue tie and for all pros who work with infants.”
“I wrote this book because when I work with parents, words just aren’t enough,” says Beebe. “They need to see. I wanted a resource I could pull from my bag and show them photos of what I was talking about.
“I also want parents to use the book to feel empowered to decide about tongue ties,” she says. “Social media, pediatricians, family members, lactation professionals, pediatricians, and the New York Times are all weighing in on the topic. I want parents to feel empowered and confident in their decisions.
A discussion with the author
We asked Beebe to tell us about the book and her experience with tongue ties. Following are her responses:
SC: You work with people struggling with nursing. How often do you find tongue tie in your lactation consulting rounds?
Renee Beebe: As an IBCLC [board-certified lactation consultant], I see feeding problems. Hardly anyone comes to me and says, “Breastfeeding is going great, and I just want you to come and witness that!”
Since tongue ties impact feeding, I tend to see them more than the general population. You can’t just quickly look at a baby and determine whether that baby’s frenulum is a problem. It’s a functional assessment and takes time and expertise. I’d say about 20% of my clients have a baby with a tongue tie or have recently had a procedure to release it and were referred to me for follow-up. But remember, I only see babies with challenges, so that does not mean that 20% of the population is tongue-tied.
SC: Some say tongue tie is over-diagnosed with too many unnecessary releases being done. Others say it wasn’t diagnosed enough for too long. Where do you stand?
Renee Beebe: In my opinion, it’s both! I sometimes see babies present in a way that suggests tongue tie, but if they resolve other muscular tension, they can have greater tongue mobility. Other times, I identify an obvious tongue tie where the parents were told, “Everything is fine” because the baby is gaining weight – but that’s because the baby’s working hard and mom’s working very hard to adapt and make sure the baby gets fed despite the discomfort. Pediatric providers aren’t always looking at the whole picture. They don’t always know the questions to ask. They see a thriving baby, so they may not see an issue.
SC: What are the short and long-term issues and risks of tongue tie?
Renee Beebe: In the short term, there may be difficulty with breast and bottle feeding, sore nipples for the breastfeeding parent, poor weight gain, and reflux. In the long term, there may be difficulty with solid foods, tooth decay, snoring, dental issues, difficulty with speech, potential embarrassment, inability to swallow pills, and neck/back pain. Most of the long-term concerns, however, are anecdotal.
SC: How do you allay parent fears about frenotomy when providers deem that it is, in fact, necessary?
Renee Beebe: That is hard. What I have seen is the most stressful part for a baby is being tightly swaddled and having their mouth held open and tongue held up—usually by an instrument. You can imagine that would be uncomfortable and upsetting. I assume there may be some pain in some procedures, but I have seen babies who don’t seem to notice and one who slept through the whole thing. I tell parents that vaccines and blood draws also hurt, but they do it because they feel it’s essential for the child’s health. I would call it a minor procedure, not a major surgery.
SC: What are your goals with the book?
Renee Beebe: I wrote this book because when I work with parents, words just aren’t enough. They need to see. I also want parents to use the book to feel empowered to make their own decisions about tongue tie. Social media, pediatricians, family members, lactation professionals, pediatricians, and the New York Times are all weighing in on the topic. I want parents to feel empowered and confident in their decisions.
Find the book
“Fit To Be Tied: A Visual Resource for Parents” is available on Amazon. $18.77.
