Tongue tie mania??

[TheGoldenApplesOfTheSun]

I've just had the strangest experience seeing a "tongue tie specialist" who seemed honestly a little unhinged?

Backstory is my baby is 6 weeks old and breastfeeding started out really well but I have been having real trouble lately with baby getting restless on the boob, slow weight gain, painful nipples after a feed - ended up concerned enough to see a breastfeeding counselor who suggested I see this lady.

I thought she would assess all aspects of feeding and give advice on position etc, as she's supposed to be a lactation consultant as well as dealing with tongue tie. But she didn't even really pay attention to the feed! (After I made sure he was hungry for the appointment, too!) Just remarked his latch is bad. She stuck her fingers in his mouth as he cried and diagnosed him with a "posterior tongue tie" which I hadn't heard of. Wanted to snip it there and then but I said no thanks will go away research and potentially come back.

I've since gone down a rabbit hole of internet research about posterior tongue tie. A friend of mine has a little boy who was tongue tied but his was really obvious - he couldn't stick out his tongue and the end of it looked heart shaped. Apparently that's "anterior" tongue tie. The "posterior" tie is something that only seems to have appeared since 2004? My little one's tongue seems pretty normal to me - he can stick it out and move it around his mouth ok? It's confusing because if you search tongue tie you get all this stuff and studies about how snipping it helps - but it seems that's only the "anterior" kind.

I thought I'd share these links in case anyone else stumbles down the same path -
littlebearcare.com/posterior-tongue-tie/#get-clipped

www.sciencedirect.com/science/article/pii/S0266613817303467?via%3Dihub

barbarahigham.com/2018/07/06/does-tongue-tie-disempower-mothers-and-damage-babies/

It honestly feels like alternative medicine. Especially when you hear people say it is hard to diagnose and some medical professionals don't believe in it. The last straw was hearing from this consultation session that a snip won't clear up feeding difficulty right away but takes weeks after as the baby needs to relearn how to use their tongue?? My friend whose baby was anterior tied said feeds were immediately better - from right after the snip.

PS I wasted £100 on this session! And it would have been more if I'd gotten the "tie" removed...

@Dingleydel, I wonder if more of the mothers in your group were having their posterior ties assessed and cut after they left hospital, as they are difficult to diagnose and thus often get overlooked in hospital. This certainly was the case with many women I have worked with. Plus, they are often not evident in hospital based on feeding alone, as babies are sleepy after birth and are only taking small amounts of colostrum per feed. They can appear to be feeding well. It is often only once babies become more alert and hungry and need to access much larger volumes of milk, that feeding difficulties come to light. Posterior ties are classic for this, as a quick look in baby's mouth will not instantly reveal a posterior tie and of a baby appears to be feeding well initially, there is no cause for further investigation. It is only days, sometimes weeks, down then the line, that problems come to light.

I have had three children with posterior tongueg tie. I had all three cut - the last the moment it was allowed - 7 days after birth. I did all privately which I know isn't an option for everyone, with the lady who was also the local NHS practitioner.

The NHS protocol here was that they had to be more than 50% breastfeeding and the referral took at least a few weeks. With TT babies struggling to put on weight this is an almost impossible goal.

I can't comment on whether this is a new thing or there is just more awareness, but without this my babies wouldn't have been breastfed and I would have lost even more chunks out of my nipples!

Everyone's experience is different, but prior to having the cut each latch was excruciatingly painful and were crusted in sores.

All three of mine had tongue ties
One dreadful anterior which went undiagnosed for weeks the other two had posterior ones snipped within a fortnight and a week of birth. The one within a week birth had to be re snipped three weeks later

The difference it made to their feeding was - in the two layer snipped ones - quite extraordinary

Thanks everyone for your responses. A lot to think over.

I'm still honestly puzzled about what the difference is supposed to be between a "posterior tongue tie" and a regular tongue though. The anterior kind is obvious - baby can't stick out their tongue. It's been known about and treated a long while. But posterior? I'm a bit suspicious given it seems to be so subtle it can only apparently be diagnosed by people who make good money removing them... I read that in the USA dentists have started to do it with a laser - cutting "lip ties" too apparently. If you have a hammer, everything looks like a nail?

In the nicest way possible - if it usually takes weeks to notice a difference in feeding after a baby has this posterior tie cut, couldn't it just have been an improvement that would have happened naturally anyway? As the baby grew bigger, got less unsettled and fussy etc?

And I'm honestly a bit freaked out at the thought of doing this snip multiple times - did it grow back?? That sounds so stressful for mum and baby!

I would do anything to help my baby breastfeed better - it's really upsetting for both of us when he struggles to latch and I'm so worried about his weight I've started to supplement with formula, which was the last thing I wanted to do. I know fed is best but it just made me feel like a failure - I cried when we made up the first bottle and gave it him.

But I just don't feel confident about this posterior TT thing.

Another article I found: www.theatlantic.com/family/archive/2019/03/breast-feeding-and-tongue-tie/584503/

Has anyone investigated how painful this is? I wouldn't let people cut bits off me without anaesthesia and as I said earlier I can testify that cutting the lip frenulum is bloody painful and that was when the local had worn off, not the main event.

OP I have to say I LOVE your attitude! You’re so level headed which is I found really hard with a young baby!
In the post birth haze someone says to you “this will help” you know nothing about it and you go along with it. Or I did anyway. It’s crazy thinking back now that I didn’t say oh wait a minute I have no clue what a tongue tie even is! Could barely see through the tears due to exhaustion and shocking post natal care. Still bf at 14m which I’m very happy about but I think has little to do with the two tt divisions DD had. You’re right, it was awfully stressful and advice from independent healthcare professionals was lacking for me as it was right at the start of the pandemic. I just wanted someone to tell me what the right thing to do was and everything you read seems to attribute absolutely everything to tt, an obsession with them almost. It was a horrific time.
You’re great for doing your research!

I also don’t get it when people say if you run your finger under their tongue there should be nothing there. Everyone has a frenulum. I have one, my DH has one. Isn’t it just about how tight/ short / whatever it is which restricts movement? DD certainly still has one now but it’s stretchy so doesn’t stop her massive tongue from sticking out 😂

My son had posterior tongue tie and nursing was a nightmare until it was fixed. His whole body relaxed after he had his tie released. It took a few weeks until his nursing got better because it takes a while for them to get used to using their tongue. He's now 2.5 and still nursing. Getting it sorted was the best thing we ever did!

To answer your questions OP.... Posterior ties are not only diagnosed by people who make money from removing them, far from it. Midwives and BF counsellors are usually the people who will offer their opinion about a TT and either refer the mother or at the very least suggest she then sees a LC to revise the tie.

Yes, sometimes, with mild or even moderate TTs, babies' mouths can sometimes grow and their tongue can get more flexible and feeding can definitely improve. With a severe TT, effective feeding is and will be simply not possible. As I said before, a posterior tie doesn't necessarily prevent a baby from wiggling or sticking out their tongue. But the classic U shape their tongue forms, prevents them from being able to compress the breast. They can't get the milk out and tire themselves out trying, which begins a cycle of hunger and exhaustion.

Your baby does not sound like they have a severe tie, as they are now 6 weeks and putting on weight, if slowly. It is worth getting a second opinion, preferably by an experienced midwife. That will put your mind at rest that there is no money to be made.

Also, it's not really posterior or 'normal' tongue tie. It's either anterior or posterior. The anterior ones are easy to see and hold the tongue in at the front. The posterior ones can be seen also (and felt) but just aren't so obviously visible so are often overlooked. They are often short, tight and inflexible, holding the centre part of the tongue down forming a U shape, so that baby can't raise their whole tongue flat to the roof of the mouth. This prevents compression of the breast and babies will often try to access the milk by chomping down on the base of the nipple with their gums instead. A normal frenulum is stretchy, soft and flexible. If you run your finger under your own tongue, you will feel the frenulum, but it won't prevent you moving past it due to its softness and flexibility. With a tongue tie, it causes a definite obstruction to your finger.

Sorry keep forgetting things! As for the 2-4 week wait for improvement.... Actually often a baby can feed properly for the first time very quickly after a snip. But it may take some days or weeks for the mother to notice a complete and full improvement because, using their tongue properly for the first time will be tiring and unusual for the baby. They'll have to learn to adjust their latch, for example, as before they would have been trying to compensate for the tie with a different latch. It improves day by day, with a complete improvement often being felt after about two plus weeks.

As for a tie growing back, it can do in a minority of babies, but not in the vast majority. The trick to avoiding this is to get your baby practising sucking skills and this using their tongue a lot!

But the fact remains that there’s no clinical evidence for posterior tt cutting. And the definition alone is woolly. See this from the blogs.bmj.com/bmj/2020/10/02/posterior-tongue-tie-the-internet-phenomenon-driving-a-lucrative-private-industry/.
Basically there’s no right or wrong decision here for the op. You can only evaluate the evidence to date, weigh up the risks/possible benefits. There’s no way that it’s not going to cause baby some pain/extreme discomfort, so I’d want to factor that in to my decision too. I don’t doubt for a second that the vast majority of tongue tie practitioners are well trained and the majority are nurses and midwives but what they are offering isn’t evidence based currently. That’s no to say with more research it won’t become so in the future. Which is probably the case given how little we actually know about breastfeeding and the mechanisms behind it.

Thought I would post an update in case anyone has a similar dilemma and comes across this thread.

I saw a different lactation consultant (one who doesn't do tongue tie division herself, so hopefully objective!) and yep, without being asked she agreed there's a posterior tie. I got a bit more breastfeeding advice from her than the other one - she suggested the "koala hold" and "biological nurturing" - holding baby skin to skin lying down. I tried the various things she suggested but they really didn't seem to help. Felt pretty down and despairing. But over the last few weeks things have actually improved!

We still have not had my DS tongue tie snipped. I decided that the evidence just wasn't good enough, especially given how stressful he seemed to find just the tongue tie diagnosis part (sticking fingers in his mouth). I figured I'd be stuck supplementing him with formula/end up fully FF and felt a bit rubbish about that but resigned.

As a last ditch try I did a couple of things I think made the difference. I spent a few days pumping like a crazy person after every night feed which seemed to really bring my supply back up and also meant I could mainly, then exclusively, supplement with EBM. I wouldn't recommend doing this for longer than a few days as it really worsened my sleep deprivation. Then I just focused on eating really well, stuffing myself and snacking in between 😁 and pumping just when he had a bottle.

I also bought this course about "gestalt breastfeeding" from one of the authors of the papers on tongue tie I'd been reading. I normally would think that kind of thing was a bit of a scam, but figured heck, it's £20 - why not try it? Watching their videos and following the method of holding and adjusting, and trying to follow their advice on ways to calm LO at the breast actually seemed to help!

It wasn't instant. We went from regular supplement at least one bottle a day formula, usually two, plus EBM, to no formula but several EBM bottles still, down to this week when there have been days without any supplement, just good feeds. My pumped milk is now building up a bit of a stash for the freezer. I waited to post because I wasn't sure if it was really improving, but it has! If I think of where we were weeks ago it feels like night and day.

I'm sure at least part of it is just luck/ him maturing. But I wanted to share what has seemed to help us, particularly as all you'll hear is to snip, when posterior TT is mentioned. There are other options that can work, thankfully

We had the same - had it snipped and it was all great from then on. My friend was the same. I'd definitely recommend it.

Other things that seemed to have an impact while I remember (so hard to say which if any did help!)

Offering the boob really regularly, like every hour or so in the day, not waiting for hungry cries. Unswaddling to feed at night so he wasn't too sleepy.

Improving daytime sleep in general - I really recommend the Huckleberry app for this. Doing a lot more active soothing, jiggling to sleep, white noise, at "sweet spot" times even if he didn't seem sleepy. Being overtired definitely made his latch even worse.

Oh, and encouraging DS to stick out his tongue at me by copying me!

That’s wonderful things have improved OP. Well done for persevering so hard to get there, I really do know how hard it is.

Just in case anyone else reads this thread: Like OP an IBCLC told me my baby had a posterior tie when she was 1.5 weeks old. I did my own research and concluded there wasn’t enough evidence to support the snip. I persisted for six weeks in attempting to get a good latch but DD was ineffective at transferring milk and required topping up with EBM after every feed. My nipples were shredded and I was so incredibly sleep deprived due to pumping after every feed. I desperately wanted to breastfeed and I knew ‘failure’ to breastfeed is actually a risk factor for PND. I felt things were really heading in that direction and FFing would have cemented it. I weighed the risks of the procedure v benefits to DD of being breastfed and decided to have the tongue tongue revision.

Problem solved. Immediate improvement followed by comfortable breastfeeding after 4 weeks. I only wish I had had it done sooner.