The Tongue Tie Conundrum

More and more babies are receiving this controversial diagnosis, and parents are getting conflicting advice. Here’s how to navigate the confusion.

A baby cries in its mother’s arms.
Photo illustration by Slate. Photo by Thinkstock.

The Kids is Slate’s science-based parenting column, assessing the latest research around children’s health, development, and well-being.

Just when you thought you’d heard of every parenting controversy, another comes along to reaffirm your belief that there’s no end to the angst of having kids. (Of course, the joy is boundless, too!) The latest conundrum I’ve discovered involves tongue ties, a hugely trendy but controversial diagnosis. Tongue-tied infants have a particularly short, thick, or tight piece of tissue connecting the underside of the tongue to the floor of the mouth, which can restrict tongue movement and hinder breastfeeding. Tongue tie diagnoses have skyrocketed in recent years, and pediatricians, lactation consultants, and ear, nose, and throat doctors vehemently argue over whether it’s better to “snip” them in the hopes of making nursing easier and less painful for Mom—a procedure that costs between $400 and $1,200 and isn’t always covered by insurance—or leave them be and try to improve breastfeeding in other ways.

I started asking around on Facebook to get a sense for what parents have been going through. The variety of experiences was mind-boggling: “Within days, he was nursing better,” reported a friend who had her baby’s tongue tie snipped, while another said that the same procedure “didn’t help with breastfeeding—at all.” Friends got no clarity from medical providers, either. “Our pediatrician was like, it might help, it might not. The ENT said the same,” one recalls. Another friend saw an ENT who said her daughter didn’t have a tongue tie, two lactation consultants who said she did, and a pediatrician who essentially shrugged and suggested that she formula feed. A couple of friends were told to perform mouth exercises on their babies to prevent their snipped tongue ties from reattaching, while another had to get her baby’s tie snipped twice because the first wasn’t “aggressive” enough.

How can such an increasingly common diagnosis—in-hospital diagnoses of newborns increased more than sevenfold between 1997 and 2012—be mired in this much confusion and angst? Is there research on tongue ties, I wondered, and can it address any of this uncertainty?

Well, sort of. There is research, but not a lot, and it’s hard to interpret. But it seems that when the right kind of tongue ties are snipped, babies do fare at least a bit better while nursing, and moms’ nipple pain often eases. (A tie can prevent proper latching and intensify sucking.) The big difficulty lies in identifying which tongue ties matter, and while there are certainly clear-cut cases, just as many ties are very hard to assess—and these are the ones that often result in ENTs disagreeing with lactation consultants disagreeing with pediatricians, leaving parents ready to pull their hair out.

First: Researchers don’t think that more kids are born with tongue ties than in years past. No one knows exactly how common they are—most professionals estimate that they affect between 2 percent and 5 percent of babies and believe that they are often hereditary—and it is likely that diagnoses have increased alongside the renewed cultural interest in breastfeeding starting in the late 1970s. “We have more mothers breastfeeding today compared to 25 years ago,” says Lisa Lahey, a nurse and lactation consultant based in Indianapolis. “If a baby is struggling, mothers are committed to finding root causes.” Providers, too, are more dedicated to identifying and solving nursing problems than they used to be and are therefore more aware of things like tongue ties. “When you start looking, you’re going to find more,” says Anna Morad, a pediatrician and director of the newborn nursery at the Vanderbilt University School of Medicine. That’s why, she says, tongue ties are the “diagnosis du jour.”

Yet only a handful of carefully controlled studies have looked at how tongue tie releases, called frenotomies, frenectomies, or frenulectomies, affect nursing. In one, published in 2011, researchers split 58 infants with pretty severe tongue ties, who were also having trouble breastfeeding, into two groups. They performed frenotomies on one group while pretending to do so on the other—they had the parents in the “sham surgery” group sign surgical consent forms and brought the babies back into a room for a few minutes just as they did with the babies who got the procedure. Then, immediately after the real or sham procedure, the mothers were asked to breastfeed without looking into their babies mouths (so that ideally, the moms didn’t learn whether or not their children had gotten the real deal), and the researchers had the moms rate the pain they experienced while breastfeeding as well as how well they felt their babies were nursing.

The study had limitations: The mothers were reporting their own experiences, which can introduce bias. (It’s better to have an independent investigator do such evaluations.) And the study investigated how breastfeeding and nipple pain were affected only immediately after the frenotomy, rather than looking at long-term outcomes, which is what moms and doctors really care about. Still, the study reported that the true frenotomies reduced reported nipple pain by an average of 71 percent, far more than the 30 percent reported reduction in the sham group (which nevertheless illustrates the power of the placebo effect). Breastfeeding scores improved by about 25 percent in the snipped-tongue babies, too, while they stayed the same in the sham-treated babies. So these aren’t miraculous improvements we’re talking about, but the percentages are also averages, so there could have been a range of responses. (Interestingly, while the researchers had planned to do a two-week follow-up comparing the two groups, they couldn’t, because all but one mom in the sham group had discovered their babies’ lingering tie and had gotten real frenotomies done.)

In May 2015, the Agency for Healthcare Research and Quality, a federal agency that provides research to improve the quality of health care, assessed all the published research on how tongue tie releases affect breastfeeding. It concluded that “a small body of evidence suggests that frenotomy may be associated with improvements in breastfeeding as reported by mothers, and potentially in nipple pain.” Another systematic review of the evidence published in March by the independent, nonprofit Cochrane Collaboration concluded that “surgical release of the tongue-tie does not consistently improve infant feeding but is likely to improve maternal nipple pain,” adding that “the quality of the evidence is very low to moderate because overall, only a small number of studies have looked at this condition, the total number of babies included in these studies was low and some studies could have been better designed.”

So yeah—not superconclusive. But when I talked to researchers who have studied the topic, they emphasized that one crucial variable that isn’t highlighted in these brief summaries is the importance of patient selection. “We have study after study showing that if you select a kid right, [a tongue tie release] helps—but we all struggle with how you select the kid,” says Jonathan Walsh, an ENT at Johns Hopkins Medicine. What seems to matter about tongue ties is not where they are located or what attaches to where, but what a tongue tie does—whether and how it interferes with the tongue’s ability to form a good latch during the nursing process.

If you perform a frenotomy on a baby whose tongue tie truly hinders nursing, then yes, Walsh says, it helps. Many “classic” tongue ties, for instance—the ties that can cause the tip of the tongue to appear heart-shaped, which often prevent babies from extending their tongues over the lower gum line to form a proper seal during breastfeeding—are wise to snip. (Even providers who are skeptical about the benefits of treating more borderline cases usually agree that classic ties are worth treating.)

But there’s really no need to treat a tongue tie if it’s not having a big effect on nursing—and studies suggest that about half of all tongue ties fit into this category. “I’ve personally cared for kids with tongue ties who have done just fine,” Morad says. “It really has more to do with the function of the tongue, and how tight the tie is, than anything else.” (Some tongue ties can affect speech development and the risk for sleep apnea later in life, but these aren’t problems you have to solve in in your kid’s early infancy.)

It’s the middle-ground cases that are really tough, of course. A provider may look at how well the baby lifts and extrudes his tongue, and how well he sucks—but the diagnosis is often more art than science. Adding to the problem, “ENTs and pediatricians learn little about the mouth in medical school. They will readily admit this,” explains Ohio-based dentist Greg Notestine. So they won’t be able to suss out the impact of every tie. And of course, breastfeeding problems come in myriad varieties, so there are plenty of tongue-tied babies whose nursing woes aren’t caused by the tongue tie. (I had excruciating nipple pain for the first three weeks when nursing my son, but he didn’t have a tongue tie. If he had, would I have gotten it snipped? I’d certainly have considered it.)

If you do decide to move forward with a release, the good news is that it is usually a quick, low-risk procedure, especially when babies are younger than 3 months old. (After that point, they’re squirmier, and often need anesthesia or sedation, which can introduce other risks.) “It’s pretty safe,” Walsh says, although as with any medical intervention, there are risks, such as excessive bleeding or accidentally cutting the lip or a salivary duct. It’s hard to say exactly how much the procedure hurts, but studies have found that infants usually cry for less than a minute, which suggests it’s not terrible, though the pain may depend in part on the location of the tie. As for whether your child might need further support afterward, it’s hard to say. Some providers believe that craniosacral therapy, in which providers massage and manipulate the face and neck, helps babies engage the appropriate muscles and learn the rhythm of breastfeeding, but research is lacking.

So what should you do if you’re struggling with nursing, have a baby with what you think is a tongue tie, but don’t know if it needs to be snipped? “Clearly, breastfeeding isn’t going as well as you think it should, and you need to go to a provider who is going to take that seriously,” Walsh says. If your pediatrician scoffs at your concerns—or is dogmatic that tongue ties simply don’t exist, ever—then you might want to find someone else. Your baby’s tongue tie, if he has one, may not be the cause of your nursing woes. But it’s important to find a doctor who’s knowledgeable and thoughtful about the issue—and who is willing to “troubleshoot to get you to the point where you need to get,” Walsh says. And then, of course, once you get there, you’ll undoubtedly find yourself facing another parenting issue that you have no idea how to handle. So it goes, so it goes.