What happens when tie surgery is not the answer?
A plethora of social media groups and pages exists where mothers and health professionals can find support on just about everything relating to oral restrictions (tongue, lip, and buccal ties) and their release.
Telling our stories is fundamental to the way mothers solve problems. Relating difficult experiences helps us make sense of what has happened to us. As a ‘keeper of stories’, a women’s magazine and blog editor, for a decade and a half, I have had the privilege to hear many mothers. Sharing struggles and triumphs over adversity has the power to change lives, generations of lives. Once you have got past those problems yourself, an understanding of just how dreadful things can be when breastfeeding is not working may mean you can offer invaluable support. A genuine desire to help another mum meet her goals is very positive.
These examples of mothers’ sharing come from Facebook support groups.
‘I’m nearly at the point of giving up. My baby is almost four weeks old and has had his lip tie lasered. I’m still getting severe nipple pain on my right breast and have had mastitis. My nipple is shaped like a lipstick. Will this improve? I’m not sure how much more I can take.’
‘I have to rant because I am frustrated. I’ve seen a couple of preferred providers and religiously done the stretches but breastfeeding has not improved and my baby son still has all the symptoms of reflux and crying. We have seen a chiro and craniosacral therapist, both before and after the tongue-tie procedures. Traumatic and expensive, what next?’
Following these two posts, came comments from mothers whose babies had ‘required’ multiple revisions of oral restrictions (surgery with scissors or laser) before they found any relief from their symptoms. One mum was about to try surgery for a fourth time as the frenulum kept reattaching. Others said they had found relief around six weeks following the procedures.
It didn’t work for us
‘After taking my baby to have a third revision, she refused to take the breast ever again. I had been pumping full time already, but after this third procedure she would gag whenever anything went in her mouth. This has been very upsetting. She certainly will never breastfeed now. I feel like such a bad mother to have put her through all this.’
A mother who has had her baby’s frenulum cut and has gone on to breastfeed successfully may share her experience to encourage another to undergo similar surgery. She may assume that because a mum relates the same symptoms or her baby’s tongue/lip looks like her own baby’s did—or like one she has treated if she is a health professional—then the same course of treatment is required. A group that focuses on support for tie surgery flourishes on success stories.
If the struggling mum opts for surgery but then finds no relief, she will likely ask questions about how to proceed—cue a discussion on stretching exercises or about how long she might reasonably expect to contend with the trauma her baby is demonstrating. In some cases, she may post a photo of her baby bleeding profusely, ‘My PP (preferred provider*) was not alarmed and told me to skip stretches until tomorrow’; or perhaps a photo of a horrifically damaged mouth, ‘I’m an IBCLC. This looks scary to me. Should my client be worried?’ Indeed she should…
Often group members will encourage further surgeries to prevent a frenulum reattaching or relate how bad things were for them too, but how they did improve with time. The questioner may find lots of reassurance and encouragement, perhaps suggestions to visit other experts, or assurances that while this speculative surgery may not save breastfeeding, it will, they say, prevent future problems.
When the surgery and post op ideas turn out not to be the promised magic bullet that they have been for others in the group, what then?
‘If your baby didn’t cope well and got oral aversion from revisions, did you have anxiety? I took my baby to a new osteopath today and she thinks my son might have got his oral aversion because of my anxiety rather than from the tie procedures and stretches. She thinks I have passed on my anxiety to him. Has anyone else had this experience?’
Perhaps osteopaths or craniosacral therapists, for instance, may be supportive, but do they necessarily have breastfeeding management skills? An IBCLC may help with breastfeeding solutions to breastfeeding problems, but can she address the trauma?
Under-reporting of negative results
A mother will stop asking for more advice when there continues to be no improvement. She may blame herself rather than continue to seek support from the group because her experience does not correspond to theirs. She abandons breastfeeding and is unlikely to report her failure elsewhere. How likely is it she will want ever again to see the practitioner who carried out the surgery?
Recently, in conversation, a speech pathologist related how tired she was of repeatedly having to pick up the pieces for parents and their babies following tongue-tie surgeries that had not had the desired outcome.
‘I saw another baby yesterday who is feeding worse (much worse) after a tongue-tie snip. This little baby has lost all suck coordination. She was being fully formula fed on a bottle already by five weeks prior to surgery, but now the mother is having to cup and syringe feed just to get any milk in. I feel it’s my responsibility to fix everything, when I never would have recommended surgery in the first place. I encourage the parents to go back to their physician or dentist who did the surgery, but often the health professional who did the surgery really has nothing more to offer (and the parents feel like it’s a waste of time).’
Perhaps the speech pathologist (or other health professional being consulted to pick up the pieces) should report back to whoever carried out the frenotomy, so that the practitioner can make a record that his procedure has failed to resolve the problem(s). But how many have the time to do that? Monitoring of follow-ups is good practice but there seems little to ensure that it happens.
Effectively the mother disappears.
No surgery is guaranteed to have the desired outcome and if the wound in the mouth has healed well, you can hardly report the practitioner who performed the surgery for a mother and baby’s failure to succeed at breastfeeding. If the baby still has reflux and cries a lot, you cannot blame anyone for that either. But you can bet the mum will blame herself.
One IBCLC said:
‘It is really hard to suggest to a very distressed mother that she return to the preferred provider when the problem has not been resolved. I did see a mother this week who was really worried I was going to suggest a further surgical intervention. She was ever so glad that working on improving positioning and attachment was the action plan.’
‘For the mum who is psychologically devastated by this whole process, who feels she has lost attachment to her infant, who helps her? In their state of despair, these mothers make no mention as to where they are directed for their mental health and well-being. Do you think women are afraid to mention how they feel personally as it may be interpreted as a sign of failure? Picking up the pieces also means emotional repair for the mother.’
In the context of social media and popular journalism, as well as in research studies, few people are interested in reading about failure. It doesn’t make for good copy and in the context of oral restrictions, it doesn’t help advocates of tie surgeries. Nonetheless, while I am aware few people wish to hear this, the under-reporting of negative results is a real problem in scientific research (Teixeira da Silva, 2015; Matosin, Frank, Engel, Lum, & Newell, 2014; Kicinski, 2014).
‘Negative results are extremely important in science because they indicate what doesn’t work’ (Teixeira da Silva, 2015).
* Preferred provider: A poster on one of the support groups asked: ‘How does a preferred provider get put on the preferred provider list? Who makes the decision? If my provider is not on the list does that mean my son’s tongue will get f#cked up? I’m in tears writing this and sick to my stomach worrying that he is not in good hands because [this Facebook group] says so. So anyone here have a great outcome with the correct diamond cut?’ Food for thought and perhaps a topic for another day …
A list of my blog posts
Kicinski, M. (2014). How does under-reporting of negative and inconclusive results affect the false-positive rate in meta-analysis? A simulation study. BMJ Open, 4(8), e004831–e004831. doi:10.1136/bmjopen-2014-004831
Matosin, N., Frank, E., Engel, M., Lum, J. S., & Newell, K. A. (2014). Negativity towards negative results: a discussion of the disconnect between scientific worth and scientific culture. Disease Models & Mechanisms, 7(2), 171–173. doi:10.1242/dmm.015123
Teixeira da Silva, J. A. (2015). Negative results: negative perceptions limit their potential for increasing reproducibility. Journal of Negative Results in Biomedicine, 14, 12. doi:10.1186/s12952-015-0033-9
More Pondering on Tongue-Tie
A list of my blog posts