Ankyloglossia: Why ‘tongue-tie’ can be dangerous for babies

Purna Parmar was eager to breastfeed her son Janav when he was born in 2011. But whenever he clutched her breast, she felt searing pain. And before long, her nipples were red, bruised, and bleeding.

“I was in excruciating pain,” recalls Parmar, who is a customer service executive in Mumbai, India. “And yet, I was racked with guilt that I couldn’t even provide this basic care for my son.”

Everyone around her was dismissive of the problem, suggesting that it was natural for mothers of newborns to face problems with breastfeeding. Her pediatrician recommended that she start using a bottle, but she endured the pain and maintained her feeding routine as best she could.

As time passed, Parmar realized that something was wrong.

At parties, his son was never able to play with the other children because he was always the last to finish eating. And at home, mealtime was always exhausting. Janav was slow with the food, taking up to two hours to finish.

“I first thought he was too lazy to eat,” recalls Parmar. “Even walking, he was slow and unbalanced. And he just couldn’t ride a bike.”

Rushing him only created more tension. Until she started blending his meals, as he couldn’t chew and swallow most of his food. Janav was always tired.

It wasn’t until 2019, when Janav was eight years old, that the mystery was finally solved. He was diagnosed with a severe case of ankyloglossia, or tongue-tie, a genetic condition that is now receiving more attention from medical experts and families around the world.

In babies born with tongue-tied, the thin strip of tissue that connects the underside of the tongue to the mouth is shorter than normal. As a result, the tongue, which normally rests below the roof of the mouth, is attached to the floor of the oral cavity, which can prevent babies from feeding properly.

This condition is believed to be genetic. It has been known for millennia, but its diagnosis can be difficult. In the United States, about 8% of children under one year of age are tongue-tied, according to research published in 2020.

Experts claim that awareness about this condition has been increasing across the world in recent years. Some countries have even had a more than 10-fold increase in diagnosed cases — and in the United States, the number of tongue-tied diagnoses and surgeries has skyrocketed. But there are still families like Parmar’s, who have suffered years of pain and tension caused by the lack of diagnosis of tongue-tied.

In developing countries such as India, health services can focus on tackling more immediate threats to babies’ health, such as infections. Therefore, tongue-tied goes unnoticed and untreated for years. And even in countries where the condition is diagnosed more often, it can be overlooked.

A few years ago, Kate Canavan, a mother of two living in Raleigh, North Carolina, observed that her youngest daughter Anna’s speech was not very clear. Anna was just two years old at the time, Canavan had no problems with breastfeeding and her pediatrician told her not to worry about it.

It wasn’t until Anna was four years old that another pediatrician said something could be wrong and referred them to a speech therapist.

“The speech-language pathologist told us she had a lipped and tongue-tied condition, and if she wasn’t treated, speech therapy wouldn’t be very effective because the anatomy of the mouth was limiting her articulation,” according to Canavan. This means that her daughter could not move her lips and tongue freely enough to speak clearly.

Problems in and out of the mouth

The first signs of tongue-tied can be problems and pain during breastfeeding, as was the case with Parmar and her baby.

“Tongue-tied children are unable to extend their tongue beyond the tip of their lips. This results in inefficiency in grasping the breast, sucking and swallowing — and all of these actions are essential for breastfeeding,” said Ju-Lee Oei, a neonatologist. senior at the Royal Hospital for Women in Randwick, Australia.

As the baby tries to move the lisp and grasps the breast to try to suckle, the result can be extremely painful for the mother. In other cases, like Canavan’s daughter, problems arise later.

“Many tongue-tied children will have no symptoms,” says Amulya K. Saxena, consultant in pediatric surgery at Chelsea Children’s Hospital in the UK, Chelsea and Westminster Hospital Foundation and president of the European Association of Pediatric Surgeons, in an interview. by email.

The tongue attachment itself can be difficult to identify. The lingual frenulum is a band of tissue that extends from the back of the mouth to the median sulcus of the tongue. If this tissue is short, the tip of the tongue cannot extend beyond the lips and tongue-tie may be quite evident.

But there is a more hidden type of tongue-tied, deeper in the mouth, that requires a healthcare professional for detection and diagnosis, according to Saxena.

Children who live with tongue-tied may find it difficult to use their tongue freely, whether it’s playing a wind instrument, licking their lips or ice cream, or helping to clean their teeth throughout the day. “In some children, cuts can occur under the tongue if the lingual frenulum gets caught between the lower incisors,” says Saxena.

The awkward position of the tongue and the weaker lingual muscle due to lack of movement can cause problems outside the mouth as well. “One of the biggest problems with tongue-tie is that it affects the balance of air pressure in the mouth, which can cause a breathing disorder that impairs sleep,” said Ankita Shah, a pediatric dentist and director of the Sleep and Language Institute. Prey from Mumbai, India, who diagnosed the case of Parmar’s son.

Tongue-tied children often breathe with their mouths open and snore, she says, which impairs the quality of their sleep. They often wake up with a stuffy nose and tend to clench or grind their teeth during sleep, causing stiff neck and shoulders and headaches. Constant discomfort, even if it is subtle, can affect your posture and overall well-being.

“We don’t realize how much the alignment of teeth, tongue and jaw can influence a whole range of body functions,” says Shah.

Quick fix?

In milder cases, the problem may resolve itself, according to Amulya Saxena. The connecting band is stretched when the baby feeds and moves its tongue. Over time, the language suffers fewer restrictions.

For him, advice on the correct methods of breastfeeding, frenulum massages and tongue exercises can help resolve these mild cases. But if that doesn’t work or if tongue-tie makes breastfeeding too difficult, the surgeon recommends the release procedure, which involves a small cut of the frenulum to help release the tongue.

But all these problems – difficulties in breastfeeding, eating, breathing, sleeping and speaking – can have other causes. And while there may be underdiagnosis in countries like India, there are doctors in other countries who consider the risk of overdiagnosing lisp.

“In 2017, we had a huge increase in cases and we decided to investigate,” reports Ju-Lee Oei. The Royal Hospital for Women in Randwick, Australia, where she works, averages 4,500 deliveries a year. Until that year, there were normally only 10 requests for tongue-tied surgery a month. “We went from 10 cases a month to 10 cases a week,” she said.

The number of cases in other hospitals in the area had also increased and some doctors were charging high fees for the procedure. “We realized that surgery was in high demand because it was considered a quick way to fix breastfeeding problems. But cutting the frenulum to free the tongue doesn’t magically solve all problems,” explains Oei.

The results of their global study, published in 2018, indicated that the diagnosis of tongue-tie had increased by more than 10-fold in some countries, varied considerably around the world, and that greater efforts were needed to standardize treatment.

Since then, the hospital’s guidelines have changed, according to Oei. All children with breastfeeding difficulties and suspected tongue-tie will now need to be evaluated by a breastfeeding specialist. Surgery is only recommended after trying to solve the problems for two to four weeks, with specialist support.

As the study by Oei and colleagues notes, even the relatively simple surgery employed for tongue-tied should not be performed freely, as “submitting babies to even a minor surgical procedure causes pain, strain, and possible long-term neurological damage.” “.

Surgery and ‘tongue yoga’

Saxena, the London pediatric surgeon, noted that families are becoming more aware of tongue-tied. “Patient support groups and professional organizations now offer information on social media,” he said.

In India, Ankita Shah also observed an increase in the number of families seeking help, even with older children. But she also advises against resorting to surgery too quickly.

Of all the patients seen at his clinic, only about half need surgery, according to Shah. This depends on the severity of the lisp and its impact on the body, including the airways.

“We evaluated the various symptoms presented by patients with this condition and asked ourselves if the problem is just due to the lisp. And we try to correct other associated problems first, before opting for surgery”, she reports.

Older children may need general anesthesia, but younger children are typically treated with local anesthesia, according to Shah. In the case of newborns, anesthesia is not used, as the risks would outweigh the benefits.

But surgery is not the end of treatment, according to Carmelle Gentle, an independent midwife and breastfeeding consultant. Gentle has founded a donation-supported tongue-tied treatment center in south London and recommends that parents help babies use and strengthen their tongue after the cut, through a variety of exercises.

“We help babies use language in a new way,” she says. “It’s similar to yoga. You may not be able to touch your toes in the first session, but gentle, regular practice will help you get there.”

For some people, increased knowledge and correct diagnosis can be life changing.

Anna, the daughter of Kate Canavan, was helped by the surgery. “As her frenulum was very thick and muscular and she was very young, the speech therapist and a [otorrinolaringologista] recommended that the procedure be performed with surgical scissors and general anesthesia. So they would take care not to damage the surrounding tissue during tongue release,” Canavan reported via email.

After the 15-minute procedure, Anna did not need painkillers and was able to eat and drink without any problems. She even went to school the next day. A month after the surgery, her speech had already improved significantly.

Purna Parmar in Mumbai, whose son has been tongue-tied for so many years, broke down in tears when her doctor told her about the child’s condition. “I was so relieved because there was a name for what we were suffering.”

It then took her two years to convince her family that the operation was necessary, but she says it was worth it. He had the surgery and the procedure helped. Today, Janav likes to try different foods, manages to finish his meal in 20 minutes – and is soon free to ride his bike.

Read the entirety of this report (in English) on the BBC Future website.