ATP RESPONSES TO TONGUE-TIE ISSUES.

Breastfeeding: Mothers are repeatedly told breast is best - but what about the lack of support when babies have tongue-tie?
The Independent, Weds 18th March 2015

Dear Editor

The Association of Tongue-tie Practitioners was delighted to see your report Breastfeeding: Mothers are repeatedly told breast is best - but what about the lack of support when babies have tongue-tie? Wed 18 March edition of The Independent highlighting the issues faced by parents with tongue-tied babies. We were very happy to see that there was a positive outcome for Kate, the mother featured in the case study. Her experience highlights the serious feeding issues that can result from a tongue-tie and the difficulty mothers often face in getting the problem recognised and treated. It is a story that is very familiar to those of us working in breastfeeding support.

Unfortunately for Kate and her son the tongue-tie reoccurred after the first procedure so a second procedure was carried out. Recurrence is a recognised complication of tongue-tie division. But it is believed to affect only a very small percentage of babies. The case study suggests that the thing that led to a positive outcome, after the second division, was the 6 weeks of wound management they followed which Kate refers to as 'the Kings College Treatment'.

This kind of disruptive wound management (which involves massaging the wound repeatedly over a period of time following tongue tie division) has been promoted by practitioners, not just at Kings College Hospital, but in other parts of the world, particularly in the United States. However, there are some concerns about this approach. Despite the fact that this kind of wound management has been recommended for several years there have been no published controlled studies done to establish its safety or efficacy. There is no agreed consensus on what post procedure wound management should involve. In the case study twice daily for 6 weeks was recommended. Others recommending this approach suggest massaging at every feed for at least a month, whilst some say twice a day for 5 days is sufficient. So it is a confusing situation for practitioners, as well as parents.

In the case study baby Ethan is reported to have tolerated the massage. But there are lots of reports from parents which describe the process as distressing, difficult and traumatic. It can also cause the wound to bleed, which can be frightening for parents, and many parents feel that it is painful for their baby and do not continue with it. There are professional concerns about increased risk of oral aversion and infection. There have also been lots of reports of babies continuing to suffer repeated recurrence of the tongue tie, despite following these massage regimens.

Recurrence of tongue tie is an issue that most definitely needs further research. It still not fully understood why it recurs in some babies and not others, although there are plenty of theories. It remains our experience that most babies do well after tongue tie division without the need for further surgery. A recent informal audit from ATP members found that around 3% of babies were returning for second divisions.

Whilst we fully respect and understand the fact that some parents may feel they would like to follow something like the Kings College Treatment after their baby's tongue tie is divided, many practitioners feel that until robust research is undertaken it is important that parents understand that, whilst some may believe these approaches are helpful, there is a some way to go before there is a consensus on how best to manage the issue of recurrence of tongue-tie. The importance of skilled breastfeeding support in achieving successful outcomes for mothers and babies should not be underestimated.

Parents and professionals can find more information about tongue-tie at www.tongue-tie.org.uk.

Yours faithfully

Suzanne Barber RM IBCLC and Lynn Timms RHV IBCLC

On behalf of the Association of Tongue-tie Practitioners

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Does Frenulotomy help infants with tongue-tie overcome breastfeeding difficulties?
Journal of Family Practice 2015 February;64 (2):126-127.

7 April 2015

Dear Editor

We are writing on behalf of the Association of Tongue-tie Practitioners ( www.tongue-tie.org.uk) and Tongue-tie UK, a grass roots organisation which aims to raise awareness of tongue-tie issues (www.tonguetieuk.org) in response to the article by J. Cawse-Lucas et al (2015) Does Frenulotomy help infants with tongue-tie overcome breastfeeding difficulties? Journal of Family Practice 2015 February;64 (2):126-127.

The article begins by answering the question with 'probably not' and says that 'evidence concerning improvements in maternal comfort is conflicting. At best, Frenulotomy improves maternal nipple pain by 10% and maternal subjective sense of improvement over the short term (0 to 2weeks)'.

Research on the efficacy of tongue-tie division is limited. But the article seems to focus only on the RCTs, ignoring other research, and we have some concerns in the way the evidence from these has been interpreted in this article.

The first study cited by Cawse-Lucas J et al (2015) was conducted by Buryk M, Bloom D, Shope T (2011). This was a single blinded RCT involving 58 infants with a mean age of 6 days. The Short-Form McGill Pain Questionnaire (SFMPQ) was used to assess maternal nipple pain before and after Frenulotomy. Mean scores were 16.8 in the intervention group and 19.2 in the control (sham) group prior to Frenulotomy. Immediately after Frenulotomy mean pain scores fell to around 4.5 in the intervention group. There was also some improvement in the control group with scores of 14.5. So some improvement resulting in a mean 4.7 point drop in pain scores was seen without Frenulotomy. However, with Frenulotomy mean pain scores dropped considerably more by 12.3 points. In the intervention group pain scores then fell to about 2.5 at two weeks, one at 4 weeks and to around zero at 2 , 6 and 12 months. All except one participant in the control (sham) group went on to have Frenulotomy by 2 weeks and their pain scores post intervention then showed a similar pattern. So, we are not sure how the conclusion that improvement in pain in this study persisted at two weeks, but not at 4 weeks and beyond has been drawn. The graph in figure one of the Buryk, et al (2011) paper suggests that the nipple pain resolved by around 2 months and remained resolved as pain scores did not then increase.

Cawse-Lucas J et al (2015) then go on to discuss the unblended RCT by Hogan M, Griffiths M, Westcott C (2005). This involved 40 infants, mean age 14 days. Maternal subjective ratings of improvement were gathered by phone interview at 24 hours. Obviously this study does not provide any evidence of long term improvement in feeding. But this is because long term outcomes were not evaluated as part of this study.

Two newer RCTs by Emond A et al (2014) and Berry J, Griffiths D, Westcott C (2012) are then reviewed. J Cawse-Lucas et al (2015) conclude that the former study 'found no breastfeeding improvements'. Yet the discussion section of the Emond et al (2014) paper states 'while the simple VAS used in the Bristol Trial (this study) was not sensitive enough to show differences between the groups, the relief of painful sucking provided by Frenulotomy was a clear theme emerging from the qualitative interviews'. The study concluded that early Frenulotomy does improve maternal self efficacy which has been shown to impact positively on breastfeeding duration. It also found that at 5 days a 15.5% increase in bottle feeding in the control group and a 7.5% in the intervention group. So there was some evidence of improvement in pain, albeit subjective and fewer of the intervention group were bottle feeding at 5 days.

The Berry J, et al study, although published in 2012, was in fact conducted in 2003/4. Cawse- Lucas J, et al (2015) state that it found no improvement in breastfeeding. Yet the breastfeeding rate amongst the babies who have received Frenulotomy at the 3 month follow up (mean age 4.5 months) was 50%, almost twice the national average of 29%. It is not unreasonable to assume that Frenulotomy played a part in this impressive figure. Surely the continuation of breastfeeding is the most important measure of success in any breastfeeding intervention.

It is interesting that Cawse-Lucas J et al (2015) refer to the position statement from the Community Paediatrics Committee of the Canadian Paediatric Society (Rowan-Legg A, 2011). However, the authors make no reference to the NICE Guidance (2005) from the UK which concluded that:

Current evidence suggests that there are no major safety concerns about division of ankyloglossia (tongue-tie) and limited evidence suggests that this procedure can improve breastfeeding. This evidence is adequate to support the use of the procedure provided that normal arrangements are in place for consent, audit and clinical governance.

http://www.nice.org.uk/guidance/ipg149/chapter/1-guidance

Furthermore the Canadian position statement (Rowan-Legg A, 2011) is itself contradictory:

Based on current available evidence, Frenulotomy cannot be recommended. If, however, the association between significant tongue-tie and major breastfeeding problems is clearly identified and surgical intervention is deemed necessary, Frenulotomy should be performed by a clinician experienced with the procedure and with appropriate analgesia.

The authors make no reference to the systematic reviews that have found an association between Frenulotomy and improved breastfeeding including Finnigan V & Long T (2013) which looked at 5 RCTS and 9 case studies and concluded that Frenulotomy offers long term improvements in over 50% of cases, Edmunds J, et al (2011) which looked at 25 papers and concluded that 'frenotomy offered the best chance of improved and continued breastfeeding' and Ito Y (2014) which concluded that there is an 'overall moderate quality of evidence for the effectiveness of Frenulotomy for the treatment of breastfeeding difficulties'.

But setting aside the RCTs and systematic reviews, what about the views of mothers. These are some of the comments sent in to Tongue-tie UK by mothers after they read the Cawse-Lucas J et al (2015) article:

'Made a big difference to us in breastfeeding and our baby was older than the ones studied here. Frankly if it helps with nipple pain then that's a win as most quit due to pain...Our baby went from the 10th percentile to the 60th 3 months after procedure'.

'The improvement in every area was unbelievable. My son put on weight and started to thrive and his colic stopped. I'm still feeding him myself now - he turned 15 months today.'

'We noticed a mild posterior tongue tie in my son at birth but decided not to snip initially as it was so minor. 9 weeks of poor weight gain later and it was really the only thing left to rule out, so we snipped it and he began gaining a pound a week from then on.'

'My 11 week old son had a severe tongue tie, I was advised to use nipple shields until his tongue tie could be snipped which despite an urgent referral being sent could take a few weeks, despite using shields feeding was excruciating, my nipples were bleeding and I was using tonnes of lanolin... He had his tongue tie snipped at our local hospital when he was 5 days old, I fed him straight after and I noticed an improvement in latch immediately and within days I was able to feed him without the use of nipple shields. Now he feeds beautifully and is gaining weight brilliantly (not that weight was an issue) and I barely even notice he is feeding. I don't think I would have been able to carry on breastfeeding if he hadn't had his tongue tie snipped as I was starting to dread feeds and was in seriously excruciating toe curling pain each feed and was so close to giving up.'

'Straight away feeding was easier, her latch was deeper but I did have to re teach her to feed. It took a good few weeks for the pain to go but neatly 12 months in and we are still feeding.'

There is no doubt that more research is needed in the area of Frenulotomy. But randomised controlled trials are not the only form of evidence we should be considering when looking at outcomes. The very nature of the procedure and breastfeeding difficulties means that RCTS are always going to be fraught with difficulty as it is virtually impossible to blind mothers to the intervention (especially now there is so much information about the procedure, bleeding afterwards and wound healing in the public domain) and there are ethical issues in withholding treatment from the control group which may increase the duration of breastfeeding. Measurement of outcomes is always going to be at least partially subjective as mothers will vary in their expectations and perceptions of breastfeeding.

Qualitative data from mothers needs to be used to inform quantitative research and we need to be cautious about the interpretation of any results. No one is claiming that Frenulotomy is effective at sustaining breastfeeding in all cases. The breastfeeding relationship between a mother and baby is a complex one and for all mothers and babies there will be other factors, other than tongue-tie and Frenulotomy, that influence outcomes. But given the numbers of mothers who give up breastfeeding in the first two weeks and the very low breastfeeding rates we have in most of the Western world we need to explore and offer any interventions,that are deemed safe, which have the potential to help improve breastfeeding duration.

Whilst we are sure the authors of this article did not intend for their medical colleagues to read it and dismiss Frenulotomy as ineffective at improving breastfeeding outcomes, there is a risk that this is how it will be interpreted by many of those who are not working with mothers of tongue-tied babies and are not hearing their stories.

Yours faithfully

Sarah Oakley BA (Hons) RN RHV IBCLC, Deputy Chair Association of Tongue-tie Practitioners (enquiries@tongue-tie.org.uk)
Annabelle MacKenzie Tongue-tie UK

References in addition to those cited in the original article:

Edmunds J, Miles S, Fulbrook P (2011) Tongue-tie and breastfeeding: A review of the literature. Breastfeeding Review 2011:19(1):19-26

Finnigan V, Long T (2013) The effectiveness of frenulotomy on infant feeding outcomes: a systematic review. Evidence Based Midwifery June 2013

Ito Y (2014) Does frenotomy improve breast-feeding difficulties in infants with ankyloglossia? Pediatrics International, 56: 497-505.

Division of Ankyloglossia(tongue-tie) for breastfeeding (2005). NICE Interventional Procedure Guidance (IPG 149)

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Does Postoperative Wound Massage Improve Outcome of Frenulotomy for Breastfeeding Difficulties in Infants? Slothouber Galbreath et al, JHL, Volume 30, Number 4, page 501, November 2014

Dear Editor Re: Does Postoperative Wound Massage Improve Outcome of Frenulotomy for Breastfeeding Difficulties in Infants? Slothouber Galbreath et al, JHL, Volume 30, Number 4, page 501, November 2014.

The Association of Tongue-tie Practitioners is a UK organisation which was set up in 2012 to promote the awareness of tongue-tie as a feeding issue, provide educational opportunities for healthcare professionals and lactation supporters, provide support and opportunities to share best practice for those dividing tongue-ties and provide information for parents. We currently have 97 members. We read the abstract mentioned above with interest and would like to raise some issues which we have set out below.

The Abstract by Slobothouber Galbraith, Fisher and Patel (which we understand was presented at the ILCA Conference 2014 and then printed in the JHL) relates to a study which aimed to assess the compliance, tolerance and efficacy (prevention of recurrence) of disruptive wound management (DWM) following tongue-tie division.

To our knowledge, there are no published controlled trials on DVM. But wound massage and/or stretching following tongue-tie division is advocated by some practitioners including dentist Larry Kotlow (http://kiddsteeth.com/dental_topics.html#breastfeeding_health). But actively disrupting the "wound adhesions in situ" seems to be a step further.

The abstract refers to the methodology as a 'single operator study'. Members of the Association of Tongue-tie Practitioners attended the 2013 Tongue-tie Symposium held at King's College Hospital, Croydon where the authors of this abstract did a presentation on this study. It is our understanding that Katherine Fisher (one of the aforementioned authors) was the 'single operator' and that no-one else was directly involved in the assessment, treatment and follow up of the breastfeeding dyads. Ms Fisher is a committed believer in DWM and actively trains and firmly encourages all parents to perform it post division. (See Tongue-tie Guide at http://katherinefisher.co.uk/videos-and-downloads/.) Hence you would not expect the parents to admit to her or any researcher connected to her that they did not comply. An independent researcher is essential. Of the original 126 dyads, 47 did not reply, and a further 19 responses were "unsuitable". We would be interested to know why only 60/126 (48%) of parents replied fully?

The results section of the abstract talks about 'tolerance'. But tolerance is not assessable. Of the 60 "suitable" replies, two thirds (40/60) said that the DWM was tolerable, suggesting that the other third found it intolerable. This group is in addition to the non-responders who may also have found it intolerable. To ask parents to perform an intolerable procedure for no proven gain is ethically difficult and many tongue-tie dividers find impossible to support.

Efficacy is measured by the lack of recurrence and breastfeeding rate. Most tongue-tie dividers accept that there may be a small (<3%) recurrence rate for anterior tongue-ties, not all of whom are symptomatic. For there to be no recurrences in 60 is therefore to be expected and is not evidence for any increased efficacy.

The breastfeeding rate of 92% at 6 weeks is very good, but includes the third who found the DWM intolerable. We do not know if this is 100% breastfeeding, which would be spectacularly good, or just one feed a day. What happened to the ones who did not reply? The actual proven breastfeeding rate is 55/126 (43%), not 92%. A breastfeeding rate at 3 months for all 126 would have been much more useful.

Members of the Association of Tongue-tie Practitioners have received reports of mothers who have been trained to do DWM who were traumatised, whose babies' tongue-ties have recurred and who then feel to blame for failing to perform the DWM correctly. This is unsatisfactory. The subject of Disruptive Wound Management is so divisive that it is critical that any study published is scientifically useful, so that we can assess if the procedure is one which we should teach our parents. This abstract confirms the views of those who do not think that the trauma of DWM has any use in anterior tongue-ties and has yet to be proven in posterior tongue-ties, whose recurrence rate is higher.

To allow equipoise in a randomised controlled trial of DWM against a control group, you need to be able to show that the intervention group (DWM) is no worse than the control group, has no side-effects which would deter participants and might have a better outcome. From this abstract it is not clear that this study is able to provide this evidence.

Yours faithfully

Suzanne Barber RM IBCLC and Sarah Oakley BA (Hons) RN RHV IBCLC
On behalf of the Committee of the Association of Tongue-tie Practitioners

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