Who is responsible for diagnosing a tongue-tie that affects breastfeeding?
International Board Certified Lactation Consultants (IBCLCs) are not registered health care professionals and the International Board of Lactation Consultant Examiners (their governing body) has issued an advisory statement that frenulotomy falls outside the scope of practice of an IBCLC. I understand that 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 invasive procedures to correct a tie.
Is the IBCLC who is making an assessment required to disclose to the primary health-care provider (or client) whether or not he or she has a medical certificate in addition to the IBCLC certification? How often is the dual certified health care professional dealing single-handedly with breastfeeding support and tie procedures?
The Association of Tongue Tie Practitioners (ATP) lists members but points out it is not a regulatory body and does not vouch for the quality of service of any member appearing in its membership directory.
The ATP says that it is essential that those performing tongue-tie procedures have:
‘advanced breastfeeding skills (preferably IBCLC) or work alongside someone with advanced breastfeeding skills.’
‘Advanced training‘ is defined as coming from the international board of lactation consultant examiners or one of the major breastfeeding charities. What does ‘work alongside’ mean and where is the boundary between competencies? Since ankyloglossia (tongue-tie) remains a condition for which there are no agreed diagnostic criteria, what exactly constitutes ‘advanced training’ is not clear. Of my own volition, I have read books, research, talked to and counselled mothers, listened to their stories, heard others’ anecdotes, and engaged in discussion with health professionals. When I was a breastfeeding counsellor with one of those major charities, though, I didn’t receive any formal training on the topic.
The IBCLC does not ‘practise medicine’, nor offer a ‘medical diagnosis’ or ‘treatment’. So IBCLCs ‘assess’ for tongue-tie rather than diagnose it, using ‘evidence based’ information and support. How does the IBCLC discern what constitutes ‘evidence-based’? This explanation of the hierarchy of scientific evidence (and what cannot be regarded as evidence at all) might make a good starting point. I note that there is disagreement on the value of most of the available relevant research. (The 2017 Cochrane review states, ‘It is uncertain whether ankyloglossia is a congenital anomaly requiring treatment or a normal variant’.)
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’ (see Clinical Lactation 8(3), 125).
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’ (see Clinical Lactation 8(3), 124).
How is this ‘any-and-everything-else‘ not a critical element of any diagnosis and care plan? Isn’t the IBCLC in the driving seat here? If she examines a baby’s tongue and frenulum and asks the mother a set of questions, to all of which mum responds in the affirmative, does that mother not assume she has already effectively got a diagnosis if the IBCLC refers her on to a health professional? And what if the health professional she refers mum to is a part of the same private practice? How many mums would be surprised to learn that an initial examination by an IBCLC was not a medical examination and the IBCLC not a registered health professional?
Will there not be situations in which the primary health-care provider knows little about breastfeeding and is having to accept the IBCLC’s word for it that breastfeeding solutions have been exhausted, when he or she is not an expert on breastfeeding management? How then is a health-care provider ideally placed to judge whether a frenulum is impacting the feeding to such an extent that it requires surgery?
Many mothers achieve a successful breastfeeding relationship with a baby that they have been told has restrictive oral ties without undergoing surgery. While many babies go on to breastfeed well following tie release surgery, many also do not go on to breastfeed (and sometimes undergo multiple surgeries and trauma). Who is to judge (and how) whether to recommend intervention if a ‘tie’ is ‘diagnosed’?
I have listened to health professionals, including IBCLCs, and they 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. Some IBCLCs have questioned the validity of information that is provided by their textbook answers on the topic. Amongst 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.
What is within the IBCLC’s scope of practice regarding identification of tongue-tie? Can health practitioners rely on self-referrals? 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.’ Alison Hazelbaker, PhD, IBCLC, FILCA, says, ‘If one has not learned how to properly diagnose using an evidence-based screening tool/process, then one should seek out training to learn or refer to someone who possesses the skill.’ How is that possible when no definitive tool exists?
Christina Smillie, MD, FAAP, IBCLC, RLC, FABM, 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)’:
‘[T]his whole diagnosis of posterior tongue-tie is only a dozen years old, and we have yet to see good studies that help guide us as to what signs or symptoms can best predict who will do well by intervention and who won’t.’ (See Clinical Lactation (2017) 8(3).)
Pamela Douglas, MBBS, FRACGP, IBCLC, RLC, PhD, 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.
And it is overwhelmingly clear that no agreed definition of tongue-tie exists. Nor is there any valid standardization or protocol for assessment of the condition(s). There are no data to inform subsequent clinical decisions. The best the experts can say is that it’s a difficult call.
So where does that leave the babies who are struggling to breastfeed and their anxious parents?
Answer: With a lot of questions.
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
USLCA, The Tongue-Tie Controversy. (2017) Clinical Lactation 8(3), 87–143.