When tongue-tie is more than being stuck for words

Once again I seem to be blogging about the same topic twice in a few days (obviously not including pregnancy – the last time this happened swimming was the thing on my mind) This week it’s been breastfeeding, which I guess isn’t surprising given that I’m thinking ahead to a new baby. So, apologies if you’re not interested in hearing about breastfeeding, but here’s another thing that’s been on my mind.

We found out, the hard way, after nearly 10 weeks of Andrew struggling to gain weight as a newborn, that Andrew was born with a tongue-tie. ‘What’s that?’, you might say, or ‘I’ve heard of it – doesn’t it just mean when you’re put on the spot and can’t come up with the words to say?’ Personally I used to associate the term ‘tongue-tied’ with the (slightly geeky and cult) comedy series Red Dwarf (some of you may know what I mean; see here if you don’t!) Basically it means a tongue which is anchored to the floor of the mouth to a greater or lesser extent by a piece of skin called a frenulum. A more technical term for tongue-tie is anklyoglossia (anklyo – anchored; glossia – tongue). It is sometimes measured (roughly) as a percentage, so a 100% tongue-tie is where the frenulum goes all the way to the tip of the tongue, and in a 50% tongue-tie (for example) the frenulum goes about half way to the tip.

Example of a tongue-tie (about 80%) (yes, this is my mouth - the mouth of a breastfed baby all grown up) Note the frenulum, the thick piece of skin anchoring the tongue to the floor of the mouth behind the lower front teeth.
Example of a tongue without a tie (thanks to my lingually superior to me husband 😉 ) Note there is no frenulum anchoring the underside of the tongue to the floor of the mouth, so it is free to stick up this far.

‘What’s this got to do with breastfeeding?’, you might well ask. It shouldn’t be too hard to imagine that the physical state of the tongue can affect a baby’s sucking action, because that’s what they suck with. The problem with this for breastfeeding is that a tied tongue is unlikely to be very efficient at removing milk from the breast, and therefore the mum’s supply will suffer, because the process of breastfeeding is such that the more milk that gets removed by baby from the breast, the more the breast produces. Poor supply leads to less milk for baby, and so poor weight gain in the baby.

However, I should point out that it is not an absolute fact that all tongue-tied babies will have problems breastfeeding and gaining weight. I found out on the same day as we found out with Andrew that I have a severe tongue-tie (more severe than Andrew did), and yet I was exclusively breastfed as a baby and my mum had no major problems doing that. There are clearly many factors involved in each individual breastfeeding relationship between mum and baby, and what causes an issue in one may not cause an issue (or the same issue) in another. But my point is that tongue-tie CAN have a big effect on breastfeeding, as Andrew and I (as well as many others) can attest. For that reason, I’d like to do my bit to try and raise awareness of this.

In my experience, one of the most important places to start with raising awareness of tongue-tie is with medical professionals, believe it or not! Of course there are exceptions to every rule, and I’m sure there are doctors, midwives and health visitors who are very clued up on this, but that was not the case in our story. I won’t go into details of our tongue-tie story here, as you can read in a separate post that will follow this one, but we were wrongly advised by two GPs about what to do about tongue-tie. I understand that they are general practitioners, and so I wouldn’t expect them to know everything there is to know about tongue-tie, but I would expect them to refer us to a specialist, given the symptoms that we were displaying as a breastfeeding pair. In the case of these GPs (and others in Cambridge that I have heard about through mums having had similar experiences), the problem is their ignorance of the potential effects of tongue-tie on breastfeeding and, to some extent, ignorance of the importance of breastfeeding itself.

But it’s not really the fault of these individual medical professionals, rather a wider cultural issue resulting from the fact that breastfeeding lost its status as the norm of infant feeding to bottle feeding, though this is currently in the process of being reversed again. Tongue-tied babies can still suck a bottle teat and drink all the milk in the bottle (but they might be slower or messier than a non-tongue-tied baby). Knowledge about tongue-tie and how it potentially affects breastfeeding has dropped off the radar in the training of medical professionals, because it was not an issue for bottle fed babies. So it’s not surprising that our GPs weren’t clued up on tongue-tie – it was probably covered in just a line or two in their massive textbooks that they read once whilst cramming for exams! I read somewhere (but I can’t find it now I’ve come to write about this, so it might be an urban legend or old (mid!)wives’ tale) that midwives used to keep one of their little finger nails long and sharp so that they could inspect the baby’s tongue when it was born and sever the frenulum quickly using the nail if the tongue was tied.

Note the 'heart shape of this tied tongue - the frenulum is pulling it down in the centre when I try to lift up the tongue. Sorry for slight blur - it's actually really hard to take pictures of tongues as they are hard to keep still!

‘Wouldn’t that hurt the baby? Sounds a bit cruel to me?’, you might say. Actually in very young babies, the frenulum has little blood supply and nerve tissue, so they don’t feel much, if anything, when the frenulum is snipped. The younger the better, because as the baby grows, the more the frenulum develops blood supply and nerve tissue, and by the time you get to my age, it would be a major operation under general anaesthetic if I were to get my tongue-tie snipped (which I won’t because I don’t need to, thank you very much!) These days, when tongue tie is actually treated in babies, it’s done with a sterile pair of blunt surgical scissors, without any anaesthetic, not even local. ‘OK, that does sound cruel’, you might say. Well, it’s no more cruel than sticking a needle in their thigh for their immunisations. In fact in Andrew’s case, he cried less (loudly and long) for his tongue-tie snip than he did for any of his injections, and quickly calmed down whilst feeding from me, during which the action of sucking helped to close up the cut effectively. I’ve heard from other mums who had their baby’s tongue-tie snipped at just a few weeks old that the baby didn’t even wake up from their sleep when it was done. So overall I would say that the small amount of pain is nothing compared to the long term benefit of having an efficient tongue suck for breastfeeding, just like the short term pain of immunisations is nothing compared to the long term gain of not catching life-threatening illnesses. Both are choices that I as a parent have had to make on behalf of my child.

Look at how near the frenulum comes to the tip of the tongue! Sadly this is about as high as I can lift my tongue in my mouth when it's this far open, and I certainly can't stick it out very far at all.

With a second baby, I’m sure there are many examples of things that will be easier because we’ve encountered them before (of course there will be new things that didn’t crop up with the first too!) Tongue-tie is one thing that I will definitely be personally more aware of with our new baby than I was with Andrew. As I said, my experience of tongue-tie was once limited to a comedy series, so I can’t stand in my greenhouse and throw stones at people who don’t know about tongue-tie – I don’t fancy getting covered in smashed glass. What I do know is that this time I will be more persistent in getting specialist advice as soon as possible, because it is quite likely that this baby will also be tongue-tied to some extent, as it runs in families and mine is so bad, though thankfully Tom’s tongue is not tied at all. I will have more  knowledge myself to try and impart on anyone who is involved who does not seem to have it themselves. If we catch and snip a tongue-tie early this time, this might help to build up my supply more in the early days, and might mean I can breastfeed with less (or no) formula supplementation.

The follow-up post to this intro on tongue-tie contains the letter that I recently wrote to our GP practice, as feedback on our experience of advice on tongue-tie. I’ve anonymised it: my point is not to name and shame, as this practice is not alone in the way they deal with this condition. I thought it would be useful to share, to complete this bit on raising awareness of tongue-tie. In the meantime, I’ll leave you with a very helpful website, which (in its own words) aims to dispel the myths and reveal the facts about this little-understood condition, just in case you’re interested in finding out more: www.tonguetie.net (need I say more….)

8 thoughts on “When tongue-tie is more than being stuck for words”

  1. You know, I have heard of tongue tie but never fully understood it. I have one (I looked in the mirror) Is that why it hurts under my tongue if I try to touch my nose with my tongue? LOL

    Just a thought… I find it incredibly difficult to roll my rrrrs. It took me years to get anywhere near and even now I have to really breathe hard and can’t roll my rs on their own it has to be in a word. I have a VERY high palate as well. I discovered this when having braces fitted. The dentist had to put extra mould gloop up in my palate as the thing they use to make casts of your teeth didn’t reach my palate. Tim reckons Oscar has a high palate too. But I’m just wondering if a combination of tongue tie and a high palate explains my severe difficulty in rolling my rs because I can’t get my tongue to lie flat against the roof of my mouth, it’s always the tip of my tongue that touches it. I thought you’re the best linguist to ask 😉

    One last thing… I tagged you in a meme for BritMums Live xx

    1. Aha, yes the rolling rrrs problem! Snap: I can’t do it either. And that’s even with attempts from a top British phonetics professor to get me to do it as I took his class during my Masters. I thought if he couldn’t teach me to do it then I must have something wrong with me! 🙂 But it wasn’t until I was diagnosed with tongue-tie when Andrew’s was by the lactation consultant that all these things fitted together, and that explained my inabiility to roll my rrrrs! I thought it was normal to have that skin under my tongue. After all, it’s not the sort of thing that you naturally compare between friends at a dinner party for example 😉 Only when I then looked at Tom’s after we got our diagnoses did I realise that I’m not normal in that respect, but he is. I also had a brace with a deep plastic palate to fill my high palate, again this makes sense now. Tongue-tie needs to be talked about more than it is in my opinion, which is why I’m trying to spread the word in my own little way.

      I’ll have a look at the meme when I get a chance 🙂 xx

  2. I have come across tongue tie in lots of babies (I am a paediatric nurse by background) and it is such a shame that GP’s don’t understand more about it because it could be dealt with so easily and quickly. Like yourself I often looked after Little Ones that were having terrible trouble gaining weight because the tongue tie had not been picked up on. Our nephew suffered as well, he also unfortunately had the added problem of not being able to pronounce his words when he started speaking as the GP’s decided he would not need his treating. He is now almost 5 and is still needing speech and language input. Great informative post! I’ll definitely be reading more as I am currently pregnant with my second too! Found you on LAB X

    1. Thanks so much for the lovely comment. I’m glad someone found it through LAB and found it interesting. I don’t know so much about the speech and language side from personal experience (despite having a tongue-tie myself I never suffered from speech problems), but it is something I’m interested in from a job point of view as I’m a linguistics (phonetics) researcher by background and my current part-time job (soon to end with arrival of new baby!) is as a researcher on a project looking at kids with speech and language problems. It really is a shame that health professionals don’t take it seriously because it really is such an easy thing to put right when the baby is so young. Great to hear from someone who’s pregnant too 🙂 I’ll take a look at your blog too x

      1. Ooh what an interesting job you have! As well as being a nurse (which I only do part time now) I am also very interested in baby sign language and work with lots of parents with children with speech delay so often meet some children who have problems with tongue tie through that as well. Looking forward to reading through our pregnancy’s together, and thank you for stopping by at mine as well 🙂

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