Censorship on Tongue-Tie. Whose Tongues Are Tied?

Censorsed again! I have lost track of the number of Facebook groups that have ejected me and banned my comments regarding tongue-tie. This time, I was thrown out of a mutual interest group for physicians and lactation consultants. I’m neither physician nor consultant but I think I can safely say I share a mutual interest. I did not seek permission to join that particular group, rather was invited so to do.

Last year it was estimated that one in three U.S. adults uses the internet to diagnose or learn about health concerns (Jacobs, Amuta, & Jeon, 2017). I don’t know the U.K. figure but have read that about three-quarters of the population engages on social media. On Facebook, you find many mothers and practitioners talking about all aspects of tongue-tie. The innovative dissemination of health care information via social media and burgeoning social networks means a great number of people are targeted by practitioners with a message to share or a service to sell, particularly with regard to specific conditions. Mothers and practitioners share their concerns and experiences of tongue-ties and the whole morass is ungoverned by any professional body. I think it important to note the fundamental difference that exists between benefits which chat groups may provide by way of group morale and dangers they pose by harmful groupthink in which dissent is not permitted.

A few days ago on the group I mentioned, I saw an advert from a tongue-tie practitioner enjoining members to pay for education they were failing to get in institutional professional training. The advert included an acronym that arguably trivialises tongue-tie surgery on infants and a video clip of a baby’s crying mouth, accompanied by a jingle of ‘Please Release Me, Let Me Go’. Regardless of your views on tongue-tie surgery, does that not seem in poor taste? Perhaps it’s a cultural thing …

I asked, what I believe to be a pertinent question,

‘Why is it not being taught though? Perhaps because it is not backed by science?’

This was followed by a somewhat derisory discussion, including the usual ad hominem attacks on me. For instance, ‘you are an excellent example of why mothers and infants suffer needlessly. time for you to get educated.’ ‘Why are you in this group? ‘you really need to get a life.’

I am then accused of insulting tongue-tie proponents because I (always) disagree. I point out that I raise questions and then everyone (always) flies off the handle. I am told that a ‘myriad of professionals from multiple fields’, who unlike me, ‘have actually been educated’, have in the past responded to me; that what they are doing is backed by ’emerging science’, and that no one ‘takes [me] seriously’ any longer, to which I ask,

‘So you are saying if you do enough of these procedures you will get the evidence?’

I’m not sure what the emojis used in their comments meant but they were obviously rude hand gestures and there was a gif of a head against a brick wall. I like words myself.

censorship-tongue-tie

I appreciate that raising a matter of ethics with those who think they are justified by ‘emerging science’ is a waste of time. But they are paying attention to bully, ridicule, threaten, censor, and exclude. Practitioners do not agree amongst themselves either and there is gossip about ‘ganging up’, insufficient breastfeeding guidance prior to and following the surgeries, as well as poor auditing of follow-ups, particularly negative outcomes. Does this come as a surprise?

Nothing in health care should be above challenge. I raise the questions I do because I have observed an unwarranted explosion in the number of babies that undergo frenotomies. These operations are done in the hope of saving breastfeeding when breastfeeding solutions have not been found to solve a mother’s problems. Breastfeeding is not something you can buy, sell, or even give away. It is a relationship. Increasingly, such surgeries are done because the parents have been told (without evidence) that not releasing the tie may lead to future health issues with regard to their child’s dental health, feeding, or speech. This is wildly speculative surgery.

Here are 10 of my observations.

The babies who have tongue-tie surgery are not going on to breastfeed as a result in any significant numbers.
Tie practitioners tell their clients that releasing the tie is only a small part of the solution to enhancing the breastfeeding experience and that several other professionals may need to be involved in the process. This deflects responsibility for a mother’s failure or success. In other words, you cannot expect a surgical procedure to fix your breastfeeding problems.
Mothers are persuaded to believe these surgeries are necessary, even when they don’t fix breastfeeding. They are even requesting them ‘just in case’. After all, every other baby they see is having it done and it’s ‘just a little snip’, perhaps it will help further down the line.
Mothers do not like to complain to the practitioner who carried out the surgery (the first step if they are unhappy). If the wound has healed well what is there to complain about? They cannot blame anyone for their failure to breastfeed. They often believe breastfeeding has failed because they have not carried out the aftercare procedure or stretching exercises appropriately, or not visited the right health practitioners, or not had additional work or surgical procedures. I suppose if you have invested time, tears, and money, you don’t want to think this surgery wasn’t for the best.
Promotion of the surgeries is zealous.
Some health care providers feel pressured into referring babies to tongue-tie practitioners for fear they will be chastised for ‘missing’ a tongue-tie.
Some are afraid of losing clients if they say tongue-tie surgery is unnecessary.
Some are afraid for their livelihood if they criticise the status quo on tongue-tie. ‘Please don’t include my name in the blog!’…
Any one in these social media echo chambers who openly disagrees about the need for these surgeries (or even the management of them) is frequently censored, i.e. banned from sharing questions or opinions that may be interpreted as opposing such surgery and removed from further participation in the group.
Some practitioners have threatened litigation over leaked comments from mothers who are unhappy with their service.

I raise concerns because babies are having irreversible surgeries in epidemic numbers without these procedures having been shown to have any proven benefit (O’Shea, et al., 2017). I have written thousands of well-referenced words on this blog. No one can justify what is happening and I shall continue to say so, politely, and without compromise.

I am a voice for babies. They should not be used as guinea pigs. If you too are questioning what is happening and why babies are being adapted in this way, please speak up!

References

Jacobs, W., Amuta, A. O., & Jeon, K. C. (2017). Health information seeking in the digital age: An analysis of health information seeking behavior among US adults. Cogent Social Sciences, 3(1). doi:10.1080/23311886.2017.1302785

O’Shea, J. E., Foster, J. P., O’Donnell, C. P., Breathnach, D., Jacobs, S. E., Todd, D. A., & Davis, P. G. (2017). Frenotomy for tongue-tie in newborn infants. Cochrane Database of Systematic Reviews. doi:10.1002/14651858.cd011065