What is tongue tie?
It is a condition known medically as ankyloglossia and occurs when the tissue connecting the tongue to the floor of the mouth – the lingual frenulum – is shorter or tighter than normal. This hampers the mobility of the tongue.
How will that affect the baby?
It may cause feeding problems, particularly at the breast, but also sometimes by bottle. However, it is estimated that the majority of infants with ankyloglossia will breastfeed successfully, according to a report on the assessment and management of the condition that was issued jointly by the Royal College of Physicians of Ireland (RCPI) and the HSE earlier this year. There is no need for intervention, it says, if there are no breastfeeding difficulties or symptoms.
How common is it?
The overall prevalence is debatable, but it is more common in boys than girls. It is found in “up to one in 10” newborns, according to the private National Tongue Tie Centre, based in Knocklofty, outside Clonmel, Co Tipperary. A wide variation in reported rates, from as low as 0.1 per cent to as high as 10.7 per cent, stems primarily from the absence of universally accepted diagnostic criteria, says Kate Roche, the centre’s clinical director.
Multiple clinical and cultural factors are driving up diagnosis, referrals and intervention worldwide, according to the RCPI/HSE report. These include an increase in awareness among the public and healthcare professionals of tongue tie as a potential contributor to breastfeeding difficulties.
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What are the indications?
When a baby is yawning or crying, it may be possible to spot signs such as the tongue not lifting or moving from side to side. The tongue might look heart-shaped when the baby sticks it out, or maybe they can’t stick it out at all.
However, persistent feeding problems are likely to alert parents or health professionals to a potential issue. A baby with tongue tie may struggle to attach, or stay attached, to the breast or bottle teat. They may make clicking noises or seem to choke.
These challenges can lead to long periods of feeding and an unsettled baby. Post-feeding fussiness can indicate inadequate intake or air swallowing, says paediatrician Dr Justin Roche, medical director of the Tipperary centre. Secondary complications can include persistent gastroesophageal reflux. The baby is likely to lose weight, or at least be slow to gain it.
How does it affect a breastfeeding mother?
Sore nipples or painful and swollen breasts are likely if a baby is struggling to feed. Not to mention the emotional trauma and exhaustion of caring for a baby who is not feeding properly.
How is tongue tie diagnosed?
All infants in Ireland are clinically examined within 48 hours of birth and tongue tie may be picked up then. The HSE says it should be diagnosed using an internationally recognised and validated score that incorporates both appearance and function of the tongue.
Functional abnormalities may not be immediately apparent and can cause symptoms similar to signs of other feeding issues. When these persist, a full assessment by an appropriately trained healthcare professional is recommended.
Who should I call?
Any mother and baby experiencing breastfeeding challenges should be assessed by an international board-certified lactation consultant (IBCLC) or healthcare professional with specialist lactation training to optimise breastfeeding techniques.
In the case of suspected tongue tie, “you can’t just look at the baby, you have to look at the mother too,” says Nicola O’Byrne, a private IBCLC. “If the mother has a great milk supply and she doesn’t have very flat, inverted nipples, it’s going to be much easier to get breastfeeding going.”
How is it treated?
Lactation support is the primary treatment, says the HSE. However, where lactation support alone has not resolved pain or latch issues, a frenotomy – also known as releasing, dividing or cutting – “is an important procedure to alleviate nipple pain and assist in the continuation of breastfeeding”. An infant with feeding issues should also be fully examined to rule out an underlying medical condition.
Just because your baby has a tie, it doesn’t necessarily mean it needs to be cut, says Lynn Carroll of La Leche League of Ireland, a voluntary breastfeeding support organisation. Deciding this takes time and babies’ tongue tie assessments take place well after they have left hospital. Yet nearly all the public tongue tie services are based in maternity hospitals, some of which, she says, do not want to see babies beyond two weeks after birth.
O’Byrne worries that frenotomy can be regarded as a “quick fix”. Parents have come to her after a cut has not solved the problems, in which case “generally, it’s a latching and positioning issue. Sometimes there is a low milk supply”.
Which healthcare professionals can do a frenotomy?
The HSE says this procedure is performed by appropriately trained healthcare professionals, including ENT surgeons, paediatricians, oral surgeons, general practitioners and dentists, as well as by a small number of specialist nurses and midwives who have undertaken additional training and act under the supervision of a consultant or physician. It is done with cold steel (scissors or scalpel) or laser. Lactation consultants, who are well placed to identify tongue tie, are not allowed to do frenotomies in Ireland, although some are in the UK. However, O’Byrne suggests there is a conflict of interest if a private provider does the assessment and referral for a frenotomy and then performs it.
Healthcare professionals qualified to treat tongue tie “are few and far between if you don’t want to pay for them, or you can’t pay for them”, says Carroll. In Dublin, there is a public clinic at the Coombe maternity hospital; also in CHI@Temple Street, where about eight babies are seen per week and only about 25 per cent would have tongue tie releases, says a CHI spokeswoman.
When performed by an experienced healthcare professional, lingual frenotomy is generally safe and well tolerated, says the RCSI/HSE report. “However, complications have been reported, including haemorrhage, airway obstruction, injury to oral mucosa or salivary glands, oral aversion, inadequate release requiring revision, infection, and scar tissue formation.”
Perhaps the most concerning misconception in tongue tie treatment today is that it is a very simple procedure, says Kate Roche. “While the physical release of tissue can indeed be completed quickly, this represents only a fraction of what’s actually required for successful outcomes.” The cutting of the tethered tissue, she says, does not resolve the complex functional problems that may have already developed.
“Babies with tongue tie spend months in utero and after birth developing compensatory movement patterns,” Roche says. Even when the restriction is gone, “the dysfunction remains deeply embedded in the neuromuscular system”.
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She maintains that without comprehensive pre- and post-operative management – including skilled bodywork, feeding therapy and motor retraining – the surgical sites frequently heal with suboptimal tissue quality.
This “snip and send home” approach, she says, explains why some families report minimal improvement despite having had the procedure.
The RCPI/HSE document recommends close clinical follow-up to determine the effectiveness of the procedure and to make sure further breastfeeding support is available if necessary. There is “much controversy”, it says, about whether or not post-operative stretches at or near the frenotomy site should be advised.
The Whiteford family’s experience with tongue tie
When it came to baby number three, Ross and Katie Whiteford did not hesitate in getting his tongue tie cut within a week of his birth.
Previous experience with their firstborn, James, now aged four, and then 22-month-old Ben, convinced them to return as soon as possible to a private service, the National Tongue Tie Centre in Co Tipperary, with newborn Ollie for an assessment. He had the procedure when he was six days old.
Research suggests that tongue tie often runs in families – and Katie herself has tongue tie. “She can’t stick her tongue out,” explains Ross from their Glanmire home in Co Cork, one day after Ollie’s treatment. Before they started their own family, she knew a baby nephew had had tongue tie sorted very simply, with scissors, by a private health provider in Cork.
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When James arrived, and after about two weeks of breastfeeding with great difficulty and pain to Katie, the Whitefords brought him to the same person. However, they were advised his tongue tie was more complex and they should go to Clonmel.
The National Tongue Tie Centre was set up in 2017 by consultant paediatrician Dr Justin Roche and physiotherapist Kate Roche, who are also both certified lactation consultants. The centre, which has an outreach clinic in Co Kildare, treats more than 1,000 patients of all ages, but mostly infants and children, each year.
When Ben was born, the Whitefords switched to bottle feeding after four days. But still “the weight was falling away on him”, says Ross. After being checked for tongue tie, lactose intolerance was suggested as Ben’s problem and they spent three weeks trying to feed him specialised formula.
“That didn’t work too well,” says Ross wryly. Ben started to develop an aversion to bottles. At nearly three months of age he was admitted to hospital, where he was put back on cow’s milk. After a week, he had regained enough weight and energy to be discharged.
But Ben continued to be very unsettled and, after a paediatric osteopath said he might have tongue tie, they booked him in for an assessment at the Clonmel centre. “I don’t know why we didn’t think about it straight away,” says Ross, but various healthcare professionals had told them Ben did not have tongue tie.
At Clonmel, he says, “they noticed his tongue tie straight away and everything made sense, what they said to us”. Ben’s tongue tie was so far back, his suck and swallow were not co-ordinated. As a result milk would pool in his mouth, causing him to nearly choke.
Ben had laser surgery about four days after the assessment, but it was hard to get Ben to accept the bottle again. Using a new type of bottle, they managed, with follow-up support from Kate Roche.
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Ben is “flying it” now as a toddler. “He’s still always on the smaller scale of things, but he’s a good muncher.”
The day before Ollie’s planned delivery on the last Friday in September, Ross booked an assessment at the tongue tie centre for the following Monday; the surgery was done three days later. The couple hope the early intervention will result in sustainable and happy breastfeeding this time.
Ross acknowledges they are fortunate in being able to afford the several thousand euro they have spent in total to have their three sons treated privately for tongue tie. Very little, other than some for lactation consultants, can be claimed back on their health insurance, he adds. A functional evaluation of tongue tie costs €350 at the Clonmel centre, with the treatment cost dependent on the type of support and surgery needed.