Awareness of tongue-tie, and its hidden impact on children's health, is rising around the world. Here's how it can be spotted and fixed.
To learn more, check this video: "Long term implications of Untreated Tongue-Tie" >
Purna Parmar had been looking forward to breastfeeding her son, Janav, after his birth in 2011. But whenever he latched on to her breast, she felt a searing pain. Soon, her nipples were sore, raw and bleeding. "I found it excruciatingly painful," says Parmar, a customer care executive in Mumbai, India. "And yet, I was wracked by guilt that I couldn't even do this basic thing for my child."
Everyone around her was dismissive of the problem, suggesting it was natural for new mothers to face some breastfeeding issues. Her pediatrician suggested she switch to formula. Instead, she put up with the pain and kept up with the feeding routine as best as she could. But as time passed, Parmar realised something was wrong. At parties, her son could never play with the other kids, because he was always the last to finish his meal. At home, mealtimes were draining. Janav lingered over his food, taking up to two hours to finish.
"At first, I thought he was a sluggish eater," says Parmar. "Even his walking was slow and unsteady. And he just couldn't balance on a bike." Rushing him only created more stress. Eventually, she pureed his meals, as he couldn't chew and swallow most foods. He was constantly exhausted.
In 2019, when Janav was eight years old, the mystery was finally solved: he was diagnosed with a severe case of ankyloglossia, also known as tongue-tie, a genetic condition now gaining attention from medical experts and families around the world.
In babies born with tongue-tie, the thin strip of tissue that connects the underside of the tongue to the mouth is unusually tight. This means that instead of resting on the roof of the mouth, the tongue is tied to the floor of the mouth, which can prevent the babies from feeding properly.
The condition is thought to be genetic, and has been known for millennia, but can be hard to diagnose. In the United States, about 8% of children under one-year-old suffer from it, according to a review published in 2020.
In some countries, tongue-tie cases have increased 10-fold
Experts say that awareness of it has been rising around the world in recent years, and some countries have seen a more than 10-fold increase in diagnosed cases. In the US, both the number of tongue-tie diagnoses, and tongue-tie surgeries, have soared.
However, there are still families like Parmar's suffering through years of pain and stress caused by undiagnosed tongue-tie. In developing countries like India, healthcare providers may focus on fighting more immediate threats to babies' health, such as infections, and as a consequence, leave tongue-tie unnoticed and untreated for years. Even in countries where the condition is more frequently diagnosed, it can be overlooked.
Some years ago, Kate Canavan, a mother-of-two living in Raleigh, North Carolina, noticed her younger daughter Anna's speech was not very clear. Anna was only two years old at the time, Canavan had not had any breastfeeding issues, and her pediatrician told her not to worry about it. It wasn't until Anna was four that another pediatrician said something could be amiss and referred them to a speech therapist.
"The speech therapist told us that she had a lip-and-tongue-tie and if those weren't addressed, the speech therapy really wouldn't be very effective because her mouth anatomy was limiting her articulation," says Canavan, meaning, her daughter couldn't move her lips and tongue freely enough to speak clearly.
The first signs of tongue-tie can be problems and pain during breastfeeding, as in the case of Parmar and her baby son.
"Children with tongue-tie can't extend their tongues beyond the tip of their lips. This results in ineffective latching, sucking and swallowing, all actions that are so essential for breastfeeding," says Ju-Lee Oei, a senior neonatologist at the Royal Hospital for Women in Randwick, Australia.
As the baby tries to move the trapped tongue and clamps down on the breast to try and feed, the result can be extremely painful for the mother.
For others, like Canavan's daughter, the problems emerge later.
"Many children with tongue-tie will not have symptoms," says Amulya K Saxena, a consultant pediatric surgeon at Chelsea Children's Hospital, Chelsea and Westminster Foundation Trust and president of the European Association of Pediatric Surgeons, in an interview over email.
The tethering of the tongue itself can be hard to spot. The lingual frenulum is a strip of tissue extending from the back of the mouth to the midline of the tongue. If this tissue is restrictive, the tip of the tongue can't extend beyond the lips, the tongue-tie can be quite evident. However, there is a more hidden kind of tongue tie, located deeper in the mouth, which requires a health professional to detect and diagnose, Saxena says.
Children living with tongue-tie may find it hard to use their tongue freely, be it to play a wind instrument, lick their lips or an ice cream, or use their tongue to help clean their teeth during the day. "In some children, it may cause cuts under the tongue if the lingual frenulum gets trapped between the lower incisor teeth," Saxena says.
The tongue's awkward position, and weaker tongue muscle as a result of the lack of movement, can cause problems beyond the mouth.
"One of the biggest issues with tongue-tie is that the air-pressure balance in the mouth is affected, and this can cause mouth breathing that disrupts sleep," says Ankita Shah, a pediatric dentist and director of the Tongue Tie and Sleep Institute in Mumbai, who diagnosed Parmar's son's case.
Children with tongue-tie often contend with open-mouth breathing and snoring, she says, which affects the quality of their sleep. They wake up frequently with a congested nose, and tend to clench or grind their teeth while asleep, leading to neck and shoulder stiffness, and headaches. The constant discomfort, even if quite subtle, can affect their posture and overall wellbeing.
"We don't realise how much the alignment of the teeth, tongue and the jaw can influence an entire range of body functions," says Shah.
Purna Parmar in Mumbai, whose son had suffered from tongue-tie for so many years, burst into tears when her doctor told her about the condition: "I was just so relieved that there was a name for what we were going through."
It then took her two years to convince her family that an operation was necessary, but it was worth it, she says. He had the surgery, and it helped. Today, Janav enjoys experimenting with different foods, can finish his meal in 20 minutes – and is then off to ride his bike.
*Extract from BBC.com "Family Tree". Article by Kamala Thiagarajan.