The Politics of Tongue Tie

I have often been critical of doctors and midwives on this blog - for not listening to mothers and for their lack of breastfeeding knowledge. I guess they might be forgiven for the latter though, since as yet most doctors and some midwives have received little to no breastfeeding education during their training. Because of this I've always urged mothers to make contact with International Board Certified Lactation Consultants (IBCLC's) when they need support with a more involved breastfeeding problem since they really are the 'Gold Standard' in breastfeeding support.

It's far from easy to become a lactation consultant - it takes years of hard work and literally hundreds of hours spent in lactation support. You have to re-certify every few years and the IBCLC qualification is well respected by mothers and professionals alike.

So I have to ask (as the mother of two children with posterior tongue ties and lip ties - finally diagnosed): why was I personally told by three different lactation consultants that posterior tongue ties 'don't exist'? Or that they are 'just the current *in-thing* like thrush was a few years back'? That they 'don't affect breastfeeding' and could not be the cause of my children's problems? Why when I followed up one discussion with supporting information via email did I not even receive the courtesy of a reply? Am I so arrogant to imagine that I, (*just* a mum) might be on the right track about something concerning my child's health? 

Why was I accused by one IBCLC of coming on too strong with a friend who very much wanted to breastfeed when I drove her an hour in one direction to see the IBCLC, then an hour in the other direction to get her a double breast pump (which saved her supply because her baby couldn't latch)? Was it because that LC had little more to offer that day than directions to the nearest Tesco so my friend could get her baby some formula? Following this encounter my friend contacted Charlie at Milk Matters and took her baby across to England where he had his posterior tongue tie revised. He went on to breastfeed for a year. Another mum (friend of a friend) who had rung me in tears* had had her baby's tongue tie spotted by the midwives in the hospital but had been told that it wasn't affecting breastfeeding. This mum had mastitis and cracked nipples by day 5 and her baby was unable to attach effectively to the breast, but clearly that MUSTN'T be anything to do with the tongue tie... These are just two examples, but I could go on!

After all [paraphrasing now]: 'Why would we SUDDENLY be seeing all these issues connected with tongue tie?' Since estimates of tongue tie frequency range from just 4% to 10% 'Isn't it a bit odd that SUDDENLY all these mums are asking if their babies have tongue tie'?'

Did none of these nay-sayers stop to wonder if it's perhaps as simple as more breastfeeding mums becoming alerted to the symptoms and asking for help (thanks largely to the internet)? How many more mothers are turning to formula feeding when their child's tie goes undiagnosed? How many tongue ties are being completely missed and instead the child ends up on medication (eg. for reflux as my eldest did) or perhaps develops speech problems further down the line and loses confidence as a result? 

On my own journey through the 'Tongue Tie Maze' I had personal contact with three IBCLC's who found it easier to tell me I was wrong (and they probably said worse behind my back!) than to give thought to the possible effects on the developing fetus of nutrition prior to and during pregnancy; supplementation in pregnancy; epigenetics; increasing levels of environmental toxins; fortified foods; increased use of antibiotics; poor maternal gut health; increasing exposure to vaccinations; or genetic mutations like MTHFR.

Because let's face it, none of that's in the LITERATURE (yet), and on that basis it can't possibly be affecting us, right? *eye roll*

I came away from those conversations feeling stupid. Like I had over-stepped my boundaries to be asking such inane questions. Naughty girl.

In the case of those three lactation consultants who dismissed me on posterior tongue tie, I could easily accuse them of doing what I often accuse medical professionals of doing - of not listening to mothers. As some of you will probably know, it's very easy to find yourself dismissed by professionals because you 'read something on the internet'. There is a saying that 'a worried mother will do better research than the FBI', and I think there is probably a grain of truth in that. I suspect that most of the IBCLC's who now specialise in tongue-tie do so because they have had to deal with it on a personal level, and likewise most of those who dismiss tongue-tie as a non-issue have not.

There is (happily) a growing number of dedicated IBCLC's working very hard to learn more about tongue tie (and lip tie). The only trouble is, even these experts cannot agree on how best to advise mothers.

You might not realise it but when you see an IBCLC who specialises in tongue tie that person might be giving you different advice to a fellow IBCLC who ALSO specialises in tongue tie. The same goes for some of the dentists and paediatricians who revise tongue and lip ties. They are all (clearly) doing their best but unfortunately the animosity and at times downright unprofessional behaviour which surrounds the tongue tie issue is quite something to behold. Stretching versus not-stretching; CST/ Osteopathy/ Chiropractic versus no bodywork and so on. And woe betide you if you get stuck in the middle of one of those nasty (and at times for me personally upsetting) cat-fights. How on earth is a mum to know what to do for the best when the professionals cannot agree? 

So what's to be done? Well, surely it's not unreasonable to ensure that every IBCLC has at least HEARD of the different types of tongue tie? That they can identify one and refer on if necessary, and have the ability to support effectively a mother whose baby is tied in some way? Is it ok that some IBCLC's have not got this knowledge? I don't think so. I would also love it if some of those who undertake lactation support would remember why they went into it in the first place - which was presumably to support mothers to breastfeed... If mums like me and my friends are being dismissed by some Certified Lactation Consultants and (importantly) are not being 'heard', then where is there left for us to turn? Is this something the ILCA needs to address? Well, in my opinion yes. I'm just throwing it out there...

More (some!) proper research is needed into how to lay the groundwork for revision, and into the best way to provide aftercare in a manner which is both effective and appropriate. Anecdotal evidence suggests that these issues are not as clear cut (pardon the pun) as some would have you believe, and until more is known it is my opinion that mothers should be told this. Those who support mothers with tied babies should be keeping good records, following-up on their procedures and sharing their information with each other in a spirit of co-operation instead of arguing over the internet about who is right or wrong.

It would also be good if more questions were asked with an open mind - for example: IS tongue tie more common these days? If so, shouldn't we be concerned that something is changing in our children? After all - tongue tie doesn't JUST affect breastfeeding - it affects the way the inside of the infant's mouth develops, the way their teeth are positioned, the very shape of their face, the way their nasal passages develop, the way they breathe, the way they digest their food and thus how much benefit they get from it. Because of this, I would suggest that dismissing mothers who are concerned about tongue tie is a very bad idea indeed.

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On a personal note: 

I want to thank Charlotte from Milk Matters, John Roberts at Cote Royd Dental, Ann Dobson, Tracy from Huddersfield Osteopaths and Marie at CranioSacral Ireland for their professionalism, kindness, their willingness to hear me, and especially for the gentle and loving way in which they have each cared for my children. 

I also must gratefully acknowledge Jennifer Tow for her advice on gut healing and her help towards finally obtaining a diagnosis for my girls.

We ended up travelling from Northern Ireland to England to have my youngest revised. There is absolutely no-one in the North of Ireland who revises posterior ties (even anterior is a struggle in some areas!). I am not aware of anyone who revises children older than 12 months in Ireland. We used our savings to pay for my youngest to be revised - for many people this wouldn't even be an option. Do I think mothers and babies deserve better? Hell yes! Will I get criticised for writing this blog? Oh probably - but it's been a long time coming.

*Just in case it's not completely obvious, I've never been paid for helping anyone with breastfeeding - rather the reverse - being a breastfeeding peer supporter has cost me both time and petrol. 

Further reading: 

http://theresearchingcrunchymama.blogspot.co.uk/2012/10/mthfr-and-our-journey-with-lip.html

http://www.brianpalmerdds.com/frenum.htm

http://guidance.nice.org.uk/IPG149

http://www.analyticalarmadillo.co.uk/2011/04/tongue-tie-hidden-cause-of-feeding.html

Read more about the 'Tongue Tie Maze' and other mother's stories here:  http://maddiemcmahon.com/2011/05/11/the-kindest-cut-the-emotional-impact-of-the-tongue-tie-maze/