Whose business is snipping tongue-ties and how is it regulated?
How many new mothers have not met at least one parent of a tongue-tied baby within their peer group? You will struggle to find one who has not. A rare problem until recent years, we are currently in the grip of a veritable epidemic of tongue-ties. New mothers, particularly those who are struggling to breastfeed, cannot escape hearing and worrying about whether their baby may have one (or more) of these oral restrictions. Facebook hosts well over a hundred active groups whose sole focus is this condition du jour. Visit any social media parenting group and the conversation at some point inevitably turns to tongue-ties. Mothers and health practitioners attribute common breastfeeding difficulties to tongue-ties (along with an ever-growing range of immediate and future health problems) and the lure of a magic fix encourages pragmatism on both sides—why not snip it and see?
The skyrocketing number of tongue-ties in recent years is peculiar to high-income countries. In a single morning at one UK private drop-in clinic, as many as 17 babies are diagnosed with tongue-tie and have the ‘snip’ on the spot. This process, where tie practitioners fail to recommend a cooling-off period for consideration to confused parents prior to carrying out the irreversible adaptation to the baby, is described by one concerned observer as ‘cut and run’ surgery.
The oral fault in infants has sparked controversy amongst health professionals and parents alike, who disagree fiercely over what the condition is, what the implications of having a tied tongue are, whether or how it should be treated, how to proceed with any subsequent wound management, and whose views are authoritative on all or any of this. The International Affiliation of Tongue-tie Professionals, whose vision statement, ‘Every individual experiences a lifetime of optimized oral function,’ states, ‘There are many gaps between our assessment and personal experience and research supported scientific data.’
What exactly is tongue-tie? The frenum is what ties the tongue. Oral tissues (or frena) connect the tongue to the floor of the mouth and the lips to the gum, and the cheeks to the gum. This tissue is what restricts the motion of the tongue. It secures the motion of the tongue too and functions as a protective, connective anchor. It is a ‘tie’ when the frenum limits the range of movement of the tongue, when this restriction is judged to be interfering with breastfeeding (or later, speech). To date, there is: no universally agreed definition of what constitutes a tongue-tie, no standard protocol for its assessment, and no reliable data to inform clinical decisions. When examining a baby’s tongue, no clear distinctions exist between what’s pathological and what’s plain normal.
Google ‘tongue-tie’ and articles often start with the assertion that it is a ‘congenital’ abnormality, so that is something you are born with, and which may or may not be inherited. Yet this has by no means been established. The 2017 Cochrane review (an independent high quality systematic review) on tongue-tie states clearly, ‘It is uncertain whether ankyloglossia (tongue-tie) is a congenital anomaly requiring treatment or a normal variant’ [1]. The growth in popularity for identifying tongue-ties illustrates how readily something becomes accepted as fact if it is repeated often enough. It illustrates too the frustration of those who want to do what they perceive to be the right thing by breastfeeding or by supporting breastfeeding and the persuasive power of unregulated media.
On the NHS information web page you find, ‘Some babies who have tongue-tie don’t seem to be bothered by it.’ And that’s the thing, babies can, do, and have always been able to breastfeed whether or not they have tight frena. No one has been able to establish that cutting tongue-ties has any ‘consistent positive effect on infant breastfeeding’ [1]. We’re not seeing improved rates of breastfeeding in line with higher rates of tongue-tie surgeries. A causal link between the two has not been established. The long-term implications of such surgery are also unknown. When a surgery is being carried out to adapt a baby’s body, isn’t it important to have robust evidence that such a procedure works, especially when such surgery is being done for the potential benefit of someone other than the patient, to relieve the mother’s pain? Such an operation is without precedent. A parent may give consent to this body modification on behalf of the voiceless baby, but can we say this surgical procedure is necessarily ‘in the best interests of the child’ in accordance with the Children’s Act 1989? To my knowledge, that is not something anyone has ever tested.
Health professionals do not concur on how to assess for tongue-tie, how to proceed where it is diagnosed, nor how to manage any subsequent wound treatment. So how is this new industry in cutting tongue-ties regulated? NICE guidance states, ‘Division of ankyloglossia for breastfeeding should only be performed by registered healthcare professionals who are properly trained.’ How does one determine what proper training is?
In 2012, the Association of Tongue-tie Practitioners (ATP) formed, with members from the NHS and independent sectors. Its aim is to assist tongue-tie practitioners ‘to provide safe and effective care through training and sharing knowledge and experience.’ The ATP does not provide any training itself but lists its members who carry out surgeries to eliminate tongue-ties. The ATP points out that it is not a regulatory body and does not vouch for the quality of service provided by any of its members appearing in the membership directory. Nor does inclusion in the ATP’s directory ‘constitute any kind of recommendation’.
The ATP states,
‘Anyone wanting to train to do tongue-tie division needs to reflect on their suitability. The feeding issues that can be associated with tongue-tie are complex and division is often not an instant fix and there are often lots of other factors that have to be addressed [these are not listed]. So it is essential that those performing this procedure have advanced breastfeeding skills (preferably IBCLC) or work alongside someone with advanced breastfeeding skills.’
The ATP defines the requisite ‘advanced breastfeeding skills’ as coming from the International Board of Lactation Consultant Examiners (IBLCE) or one of the major breastfeeding charities. You can train to volunteer with any of the major breastfeeding charities without any qualifications, provided you can establish your personal breastfeeding credentials. Situated in the USA, the IBLCE is the self-governing body of International Board Certified Lactation Consultants (IBCLCs). IBCLCs certify by sitting an examination in breastfeeding management but (in the UK) they do not register as health care professionals.
The IBLCE recently issued an advisory statement that frenulotomy (the surgery to cut or laser tongue-ties) falls outside the scope of practice of an IBCLC. However, if an IBCLC has an additional licence, for example is a registered nurse, physician, midwife, neonatal nurse practitioner, dentist, speech/language therapist, chiropractor, occupational therapist or physical therapist, he or she then has the power to assess, diagnose, and carry out the invasive procedures to correct a tongue-tie.
If you are a registered health practitioner within whose scope of practice tongue-tie falls, training to learn the surgical procedure to cut tongue-ties takes a couple of days. The ATP states, ‘self-employed nurses/midwives providing frenulotomy do not need to be registered with the Care Quality Commission’.
Traditionally, lactation consultants offer motherly guidance and practical troubleshooting plans to support mums to breastfeed. The IBCLC does not ‘practise medicine’, nor offer a ‘medical diagnosis’ or ‘treatment’. IBCLCs ‘assess’ for tongue-tie rather than diagnose it, using ‘evidence-based’ information and support. How does the IBCLC discern what constitutes ‘evidence-based’ when tongue-tie remains a condition for which there are no agreed diagnostic criteria? There is widespread disagreement on the value of all the available relevant research [1].
In September 2017, Elizabeth Brooks, JD, IBCLC, FILCA, who wrote the only textbook focusing on IBCLC ethics and legal issues, said, ‘A critical role the IBCLC plays is to educate the family, and health-care practitioner colleagues, about the role of the tongue in effective breastfeeding, and how oral restriction can have a negative impact on feeding’. While IBCLCs are not vested with the ability to diagnose tongue-tie, she goes on, ‘any-and-everything-else is right in the IBCLC bailiwick: Show the family how and why the oral examination is being done; inform them about what is being observed and how this fits with (and can explain) the overall lactation problems (pain, injury, low milk supply, long and ineffectual feeds, slow weight gain); explain that an actual diagnosis is made by the child’s primary health-care provider, but ineffective breastfeeding history is an important element to consider; describe treatment options the family might discuss with the primary health-care provider (including frenulotomy and appropriate wound care after such a procedure); devise a lactation care plan to protect milk supply and feed the baby while all care options are considered for the tongue-tie … including the family’s decision not to have it revised’ [2].
Is the IBCLC not in the driving seat here? How is this ‘any-and-everything-else’ not a critical element of any diagnosis and care plan? Amongst breastfeeding experts there is considerable disagreement on what the role of the tongue is in ‘effective breastfeeding’ and on explanations for how ‘pain, injury, low milk supply, long and ineffectual feeds, and slow weight gain’ ‘fit with’ and ‘explain’ lactation problems with reference to oral examinations. 
How many mothers are surprised to learn that an oral examination by an IBCLC was not a medical examination and the IBCLC not a registered health professional? If an IBCLC examines a baby’s tongue and frenum and asks the mother a set of questions, to all of which mum responds in the affirmative, does that mother not assume she now effectively has a diagnosis if the IBCLC refers her on to a tie practitioner? And what if this practitioner works in the same private practice as the IBCLC, is there then not a conflict of interests?
Breastfeeding is a skill that commonly takes weeks even months to master. Countless mothers throughout time have triumphed over adversity and succeeded ‘against all odds’ to breastfeed. Who decides at what point breastfeeding solutions have been exhausted, the IBCLC or the mother? How is a health care provider ideally placed to judge whether a frenum is impacting the feeding to such an extent that it requires cutting? And what precisely does the ATP mean when it says that the provider of the surgery should ‘work alongside someone with advanced breastfeeding skills’ if he or she does not possess such skills? What are ‘advanced breastfeeding skills’ even?
Will there not be situations in which the primary health care provider is having to defer to the IBCLC that breastfeeding solutions have been exhausted, when he or she is not an expert in breastfeeding management? Where is the boundary between competencies? And what happens when the IBCLC and tie practitioner disagree over what options are appropriate?
Is the IBCLC who is making an assessment required to disclose to the primary health care provider and client/patient whether or not he or she has a medical licence in addition to the IBCLC certification? How often is a dual certified health care professional dealing single-handedly with both breastfeeding support and tie procedures?
I don’t know the answer to any of these questions.
Many mothers achieve a successful breastfeeding relationship with a baby that they have been told has a restrictive tongue-tie without its undergoing surgery. While many babies go on to breastfeed well following tie surgery, many do not go on to breastfeed (and sometimes undergo multiple repeat surgeries, even as many as 5). Some suffer trauma and oral aversion as a direct consequence. There have been disturbing cases of excessive bleeding in babies who have been admitted to hospital. Sometimes the cut has gone through to the muscle. Even where the wound heals well and mostly it will, the procedure hurts and the language and euphemistic use of words like ‘snipping,’ clipping,’ ‘division’ and ‘revision’ all trivialise the baby’s pain.
Can tie practitioners rely on self-referrals? Mothers in support groups on Facebook frequently tell other mothers that their babies have a tongue-tie, hastily and on the strength of a photo or a list of symptoms. Tie practitioners Roberta Martinelli, MS, SLP, and Irene Marchesan, PhD, SLP, say that mothers can provide information for other mothers ‘to be aware of possible tongue-tie’. Carmela Baeza, MD, IBCLC, RLC, says, ‘Many mothers know more about breastfeeding than health-care providers. I often receive dyads who have been referred to me by mothers, who perhaps had breastfeeding problems because of tongue-tie themselves and can therefore identify the problem.’ [2]
I’ve heard stories of mothers recommending one health professional over another because they are ‘tie savvy’. In other words, they will be more inclined to recognise a tongue-tie if a mother says she suspects there is one.
One mother shared her story of what she regarded as a narrow escape for her unsettled three-week old.
‘I google and google until I drive myself demented and I keep coming up with tongue-tie. I telephone a tie practice with good reviews. By the end of the call, I am absolutely convinced that my baby has a tongue-tie. We book in for an appointment [during which] I learn my baby has a very restrictive tie. The practitioner is ready to divide it on the spot but I ask for the practice’s figures, for how many people during follow up say the surgery has or has not made a difference, how many people come back because of reattachment of the frenum and so on. They don’t keep figures. I am quite shocked by that. I decide not to go ahead, pay and leave.
In the breastfeeding support groups there are loads of babies with tongue-ties. And I mean, there are more babies with tongue-tie than without. The Facebook support group I joined was full of people who were still having problems after tongue-tie divisions. The scaremongering about the other things apart from breastfeeding issues that these ties are gonna cause: speech delays, eating problems and tooth decay, etc. As far as I know, there’s been no research into the long-term effects of tongue-tie surgery. It makes me feel upset to think that I almost put my baby through it. I’m beyond glad I didn’t. Eventually the feeding grew easier. I feel really lucky, like we’ve escaped!’
Christina Smillie, MD, FAAP, IBCLC, RLC, FABM, respected paediatrician and speaker on the clinical management of a wide variety of breastfeeding issues, says that the oral exam can change ‘dramatically’ from one day to the next, depending on a number of different factors, including how well nourished the baby is. She says things can appear very different even within one two-hour appointment. And she concludes, ‘Primum non nocere (First do no harm)’.
Pamela Douglas, MBBS, FRACGP, IBCLC, RLC, PhD, associate professor and senior lecturer at the University of Queensland, Brisbane, Australia, warns against the destructive psychological phenomenon of ‘groupthink’ that has the lactation community in its grip on the subject of oral restrictions. With soaring rates of tongue-tie, there is naturally a suspicion that some people may be jumping to conclusions.
The ATP freely admits that tie surgery offers no guarantee of a quick fix. It says,
‘As many mothers and babies need further help and support after tongue-tie division, the person you choose [to carry out the surgery] should either have expertise in breastfeeding or be able to refer you to someone who does.’
In other words, once surgery has failed to fix your problems, why not try additional treatments? Following recommendations to see further health care providers can be an expensive route to take and diffuses the responsibility. Ah, but you must remember that tongue-tie is a multi-factorial issue … As popular tongue-tie expert Bobby Ghaheri, MD, wrote, it ‘takes a team to improve breastfeeding after a tongue-tie procedure’. This ‘team’ is growing along with the number of diagnoses. It includes IBCLCs for breastfeeding guidance, chiropractors and craniosacral therapists to alleviate muscle tension, ENTs for other possible mouth and throat issues, speech and language pathologists to examine swallowing dysfunction, osteopaths for manual therapy, and myofascial release therapists (I’m not too sure what their role is, but it will take you only seconds to find out online). Possibly you may want to see a therapist, too, to talk about how upset and confused you probably are by this point.
Making a fully informed decision about whether or not you should allow someone to cut your baby’s frenum is not possible on the existing evidence. It seems to me that the best the experts can offer is that it’s a difficult call.
Where does that leave the modified babies who are struggling to breastfeed and their anxious, out-of-pocket parents?
Answer: With a lot of questions.
References
[1] O’Shea, J. E., Foster, J. P., O’Donnell, C. P., Breathnach, D., Jacobs, S. E., Todd, D. A., & Davis, P. G. (2014). Frenotomy for tongue-tie in newborn infants. Cochrane Database of Systematic Reviews. doi:10.1002/14651858.cd011065
[2] USLCA, The Tongue-Tie Controversy. (2017) Clinical Lactation 8(3), 87–143.
Submitting a complaint about your IBCLC
See too:
Always Ask Questions: Don’t Let Your Tongue Be Tied
Does Tongue-Tie Disempower Mothers and Damage Babies?
How Credible Is The Current Oral Tie Trend?
Is The Current Breastfeeding Problem a Fault in Babies’ Mouths?
Is The Treatment of Tongue-Tie an ‘Unjustified Enthusiasm’?
Reading Between the Lines Post-Tie Surgery
Spinning a Web: Spiders and Tongue-Ties
Surgery on Babies: Does it Hurt?
The New Sucking Model and Tongue-Tie
Tongue-Tie Epidemic Poses Risk to Community
Tongue-Tie Politics of Breastfeeding
When Releasing Tongue-Ties Does Not Fix Breastfeeding
Who Diagnoses Tongue-Ties that Interfere With Breastfeeding?
Pondering 