Features

Why are they waiting?

06 June 2019

Tongue-tie can be a problem for mothers and babies when it prevents them from breastfeeding, and long waiting times for the simple fix can make it worse, reports journalist John Windell.

In 2014, the average waiting time for the treatment to correct tongue-tie in babies was 21.6 days, or just over three weeks, a survey of NHS trusts in England found. Among the trusts with the longest waits, the average was as high as 84 days, or almost three months. In absolute terms, those waits don’t look so long for a routine procedure. But for mothers who are attempting to breastfeed their newborns, any delay in dealing with the condition, which has been found to affect between 0.02% and 10.7% of babies, can mean the difference between success and failure.

Tongue-tie, or ankyloglossia, is where the thin stretch of tissue – known as the frenulum – that attaches the tongue to the base of the mouth is too tight, short or thick. As a result, the baby will have restricted tongue movement and may not be able to open its mouth fully. For many babies tongue-tie is not a problem, but for some it can be an obstacle to breastfeeding as it prevents them from latching on to the areola properly, meaning they don’t feed fully and are left feeling frustrated and hungry. A few may fail to develop and thrive. For mothers, the cost is often sore nipples, a disruption to their milk supply and a sense of failure.

The prevalence of tongue-tie among infants is hard to quantify. According to a review by Power and Murphy (2015), ‘there is wide variation in prevalence rates… from 0.02% to 10.7%’. This review wasn’t restricted by country, but the searching of studies on infants with tongue-tie was restricted to English language articles or those translated into English.

The rate of those babies with tongue-tie who have trouble feeding is equally hard to pin down. Suter and Bornstein (2009) found that, ‘of infants with ankyloglossia, there is a reported 25% to 80% incidence of breastfeeding difficulties’. Edmond et al (2014) estimated that more than 50% of babies with tongue-tie do not experience feeding problems, although they found early frenotomy was associated with improved breastfeeding self-efficacy.

Variable service

‘Once tongue-tie is affecting feeding, it is better that the procedure is done sooner rather than later, because when the mother is in pain and the baby is struggling to feed, it is really hard for them to keep going’

The NICE guidance (2005) on the division of tongue-tie in relation to breastfeeding says: ‘Current evidence suggests that there are no major safety concerns about division of ankyloglossia… and limited evidence suggests that this procedure can improve breastfeeding.’

The procedure itself involves cutting the frenulum and is relatively quick and painless, usually performed without any anaesthetic for babies who have yet to teethe.

But in the five years since the long waiting times for the tongue-tie division procedure were brought to light, have they got any better? ‘I haven’t seen any indication that there has been an improvement,’ says Patricia Wise, breastfeeding counsellor for the National Childbirth Trust (NCT). ‘We sent out a questionnaire to NHS trusts late 2014, and from the results (reported in 2016), it is clear that waiting times are still very variable and some quite long. It’s a postcode lottery.’

Sarah Oakley, the chair of the Association of Tongue-tie Practitioners (ATP), and a former health visitor, agrees. ‘No, I don’t think anything has changed. In my area, and from what I know as chairperson of the ATP, it is highly variable. You still hear of people reporting that they have waited eight or nine weeks. It can also be very random.

‘I had a mum the other day whose baby had been diagnosed two days before the monthly clinic and so had the procedure done quickly. But if that diagnosis had been three days later, she would have had to wait another month for the next clinic. A lot of areas say waiting times are fine at two to three weeks, but even that is a long time.’

For many mums and babies, the long wait can have a profound effect on their attempts to breastfeed. ‘Once it looks as though the tongue-tie is affecting feeding, it is better that the procedure is done sooner rather than later, because when the mother is in pain and the baby is struggling to feed, it is really hard for them to keep going,’ says Patricia.


Problems caused by tongue-tie

According to the ATP, tongue-tie can cause a range of issues for mothers and babies:

Issues for the mother:

  • Sore/damaged nipples
  • Nipples which look misshapen or blanched after feeds
  • Mastitis
  • Low milk supply
  • Exhaustion from frequent/constant feeding
  • Distress from failing to establish breastfeeding

Issues for the baby:

  • Restricted tongue movement
  • Small gape resulting in biting/grinding behaviour
  • Unsettled behaviour during feeds
  • Difficulty staying attached to the breast or bottle
  • Frequent or very long feeds
  • Excessive early weight loss/poor weight gain/faltering growth
  • Clicking noises and/or dribbling during feeds
  • Colic, wind, hiccups
  • Reflux (vomiting after feeds)

Deeper issues

Sarah says that while she thinks there are many reasons for the delays, she is not necessarily in favour of the NHS pouring lots more money into dealing with tongue-tie. ‘Tongue-tie divisions are often not successful for all sorts of reasons, not just because the mum was put on a long waiting list,’ she says. ‘It can be because somebody hasn’t done a particularly good job of it, or because there has been no follow-up. Not every baby instantly feeds brilliantly after a tongue-tie division. The mum can also have supply problems, or may have lost her confidence. It requires good assessment beforehand and good follow-up afterwards. Instead, mums often get 20 minutes in clinic with the surgeon and are then sent on their way.’

Patricia agrees that the assessment is a vital step in the process. ‘I think mums and babies are sometimes referred for the procedure, or it is suggested, without an assessment. It really is important that a specialist has looked at the situation.’

A better assessment during the early days of breastfeeding would make it easier to pick up the babies who are genuinely struggling as a result of tongue-tie. ‘Some babies with tongue-tie feed absolutely fine and don’t need the procedure, so we don’t need to jump in there,’ says Sarah. 

She quotes a study in Brazil where just 3% of 200 babies with tongue-tie had a feeding problem and needed a division (Haham et al, 2014). ‘There is a danger of over-diagnosing,’ she says. ‘So a good assessment is as important as having the procedure done in a timely way. But it needs to be a robust breastfeeding assessment, because sometimes tongue-tie is only part of the problem. If we sort this out it might push up the breastfeeding rate a bit, but it’s not going to do it on its own.’

Any tongue-ties left untreated are likely to remain, though some children may rip or tear them by accident during falls, or when putting objects in their mouths. A thin tongue-tie may stretch as a child gets older, but thicker tongue-ties may also cause problems with speech development and are possibly linked to misaligned teeth and sleep apnoea in later life. In these cases, surgery may still be an option.

Wait and see

Health visitors can help with the all-important early assessment of tongue-tie by observing babies and mums during breastfeeding. ‘It’s important to have a thorough overview of what is happening,’ says Patricia. ‘For example, look at whether the baby can be attached better at the breast. Or, if the mother is topping up with formula, suggest she expresses her breast milk, as that will increase her supply. Ask what is going on and what might help.’

For any baby who is presenting with any sort of feeding issue, the prospect of tongue-tie is always present. ‘Think of it as a possibility,’ says Sarah, ‘but work on all the basic stuff first, such as positioning, attachment and so on. After you’ve done that you can begin to wonder if there is a tongue-tie.’

Detecting tongue-tie is about close observation. ‘Look at the tongue mobility,’ says Sarah. ‘It’s not about what’s under the tongue, because you might not be able to see much unless you know what you are looking for. But does the baby poke its tongue out when trying to latch on to the breast? Does it stick its tongue out when crying? – things like that. If there is any doubt, refer them on and get a specialist opinion.’ But as services can vary enormously from place to place, you will need to know what the local arrangements are.

‘It’s also worth getting some training if you can,’ adds Sarah. ‘I have just trained all the health visiting staff in Kent how to identify tongue-tie, though that is a unique thing to that area, and again, not everywhere is equal.’


Resources

  • Association of Tongue-tie Practitioners offer a range of resources, including leaflets, factsheets and posters tongue-tie.org.uk
  • International Affiliation of Tongue-tie Professionals has more information on the condition, plus a series of webinars on clinical aspects tonguetieprofessionals.org
  • NCT: Charity supporting women during pregnancy, childbirth and early parenthood bit.ly/NCT_support
  • UK Baby Friendly Initiative provide lots of information for parents and professionals on care for babies babyfriendly.org.uk
  • The National Breastfeeding Helpline at 0300 100 0212 provide trained volunteers who can help parents with breastfeeding queries nationalbreastfeedinghelpline.org.uk

 

References

Emond A et al. (2014) Randomised controlled trial of early frenotomy in breastfed infants with mild-moderate tongue-tie. Archives of Disease in Childhood: Fetal and Neonatal Edition 99(3): F189-95

Haham et al. (2014) Prevalence of Breastfeeding Difficulties in Newborns with a Lingual Frenulum: A Prospective Cohort Series. See: https://www.researchgate.net/publication/265859110_Prevalence_of_Breastfeeding_Difficulties_in_Newborns_with_a_Lingual_Frenulum_A_Prospective_Cohort_Series (accessed 22 May 2019).

NICE. (2005) Division of ankyloglossia (tongue-tie) for breastfeeding. See: www.nice.org.uk/guidance/ipg149/chapter/1-Guidance (accessed 15 May 2019).

Power RF, Murphy JF. (2015). Tongue-tie and frenotomy in infants with breastfeeding difficulties: achieving a balance. Archives of Disease in Childhood 100: 489-494

Suter VG, Bornstein MM. (2009) Ankyloglossia: facts and myths in diagnosis and treatment. J Periodontol 80(8): 1204–1219

Image credit | iStock

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