Baby with tongue tie - any experiences?

[Sparkeleigh]

My baby has been diagnosed with a tongue tie. He wouldn't bf at all on hospital unless the midwives squished my boob and shoved him into it and they were concerned about him not feeding so eventually I gave him formula to get home.

Since then my milk has come in and I've been expressing. I saw a Lll leader yesterday who diagnosed tongue tie, and said clipping it could improve how he feeds.

Does anyone have experience with a baby with tongue tie and did you get it clipped?

My DH feels that if it's just to make our lives easier and get more sleep it's a bit selfish to put him through it. He's been feeding and changing DS at night while I express but I'm worried at how practical this will be when his paternity leave is over.

I don't know what to do, it seems easier to do it now when he's only a week old than later and I'd really like to breastfeed him, even if that is a bit selfish. I've tried nipple shields and he seems to be able to feed through those but they're so fiddly and need constantly sterilised they're not practical for all feeds.

Thanks to anyone who read that essay!

Thank you everyone for your replies, it's great to hear of so many good experiences, I didn't expect it to be so overwhelmingly in favour.

DH and I just want what's best for DS, neither of us had heard of tongue tie before this and the cure sounds a bit cruel at first.

I contacted breastfeeding support at my GP and they're referring us to the breastfeeding coordinator at the hospital he was born at. She'll be able to examine it and refer us onto a surgeon.

Thanks again for the replies!

Just so you know, at that age private lactation consultants are licensed and able to do the snip at your home.

We paid £100 or so to have it done at home at 1wo, our neighbour had to wait over 6wks for a hospital appointment for the exact same procedure on her DS born a week after ours.

She did the follow up appointments at home too. All paperwork above board, signed in red book, copies sent to GP and HVs.

If you are able to consider the cost and have someone qualified in your area, I really think the quicker you get it done the better, tho obv free at hospital within a week would be great!

Good luck getting it sorted!

OP if you are looking at a long wait time, I would recommend finding a practitioner who can divide it at home for you. They are all now listed on the Association of Tongue Tie Practitioners website.

My private lactation consultant snipped the thin front part and totally left the thick back. This meant weeks on end of pain for us both and eventual failure to bf.

Mervyn Griffiths in Southampton takes a cheque for £100 if your GP refers you directly, then tries to claim via your Trust for NHS funding. Our Trust paid so we were sent back our cheque, and it cost us nothing.

They told me at his clinic that we were not the first people they'd seen whose private lactation consultant had failed to cut the frenulum correctly. And our Trust here have 2 midwives qualified to perform it who can fit any mother and baby in within a week. Definitely worth checking out better options, IMO.

The specialist breastfeeding clinic at the John Radcliffe in Oxford is a great source of advice and support as well.

It is far from cruel, it is so quick and hardly painful - it's the kindest thing to do for your baby, tbh, because it will probably make life much easier for him to feed etc.

Just one cautionary note, and I was given this advice by another HCP - the laser division can take longer to heal than the simple snip so if you have the choice, snipping might be better. :)

The paediatrician who did DS1's TT was gathering feedback as well - I had to fill in a form after about 2 weeks to say how much difference the division had made (enormous!) and giving the level of TT (minor).
He told me that he'd seen partials snipped making massive differences or making no difference; and severe TT snipped making no difference or making massive differences.

You can't know how much difference it will make until it's done - but NOT doing it will obviously not make any difference, so at least you have the chance of it improving if you have it done (and as you can see from this thread, in the vast majority of cases the difference is very quick, and can be huge). It was a no-brainer from my POV - I was in huge pain, DS1 was taking 2h+ per feed - sooooo worth it.

The earlier the better.

My DS had posterior TT cut at 11 weeks 6 days. I wish it had been diagnosed earlier because he's developed a really bad feeding style and it affected my milk supply.

Feelinggutted.com

Ps. It would have been selfish NOT to get it cut as feeding was affected! My DS was so clicky the wind was horrifically painful for him.

His reflux improved almost immediately too. Apparently it can be linked.

You don't neccesarily need a surgeon to snip the TT, there are qualified midwives in the community who can do it

Agree earlier the better, DS's was snipped at 11 wks and it was a much harder recovery for him, as well as being very difficult for him to catch up weight-wise without formula.

My DD wasn't snipped as I managed to bf her. But, at 6 months we started BLW and she was unable to move food around her mouth as the tongue couldn't extend far enough.

When she was 9 month we had the tongue tie snipped under general anesthesia.

I would never again wait and believe it will be ok. When they are tiny it is a simple procedure not a full blown hospital theatre one.

Laser has many advantages over scissors.

It cauterises as it goes, so less chance of bleeding and a reduced risk of reattachment (still need to do the aftercare).
With a laser, it is done millimetre by millimetre, assessing as they go as opposed to one snip.
Some ties are too deep to be completely released with scissors.

Saying that, it really is more about who has the tool in their hand rather than the actual tool itself.

And I also want to say that all frenectomy providers are not equal. We took DS1 to a paed surgeon who is on the Unicef list and ran the tongue tie clinic here. He failed to recognise ds1's posterior tie. I should have walked at that point, but I was desperate. DS1 was put under GA and the revision was not done properly. Just because they are on a list does not mean they will do a good job.

Just sayin'

Not read all of these, but just wanted to add my experience. DS had tt which was snipped at 10 days (10 days too long as far as my poor nipples were concerned). Was still using nipple shields for a few months as was sore but healed up eventually and due to generous supply DS thrived on it. However, in hindsight, it was always a bit uncomfortable and I think he probably has a lip tie too (his top lip always curled under when he fed) and I don't think that helped matters. So something to ask about if you get your's divided. The op itself was very quick, a quick snip with a pair of nail scissors and then onto the boob. He was a bit grumpy for an hour or two, but fine after that Definitely worth having done now, will be a lot more traumatic later.

My DS (3) has one but they advised I didn't have it clipped because it wasn't that bad. He can get the tip of his tongue out, never affected his feeding and whilst his speech was viewed as being delayed I don't think it was to do with the tongue but was more of a genetic thing and he now talks perfectly and fluently. One MW at the time told me a friend of hers still has hers unclipped in her thirties, I know many people do live quite happily with them (recall someone on either the voice or BGT this year but I don't remember saying he had one, didn't affect his beautiful singing voice!).

Depends on how bad it is though. If it had affected his feeding I would have been more inclined to have it clipped. If it's so bad they can't lift the tongue or stick it out at all then yes, I would have had it clipped. It's best done as early as possible though because later in life it has to be done under general.

Reading all of these has made me a bit concerned. Ds3 had his anterior tt snipped at about two weeks old. The midwife told me he was 90% tongue tied.

However, since then, he still hasn't poked his tongue out, there is still a slight 'v' shape at the end of his tongue and he doesn't gape his mouth open. Breast feeding is fine though. I am beginning to wonder if he has a posterior tt too.

He is very windy and putting on weight fine.

I also notice he has an upper lip tie.

He is now 11 weeks old.

I don't really think our hv is that good, so I am tempted to go straight to the doctor. But if it isn't impacting feeding, will they do anything?

Sheep, DS2 still has a slight V at the tip of his tongue (he's now 13mo) but he can turn his tongue right over in his mouth, and he has an upper lip tie (as did Ds1 until his cousin kicked it out when he was 2). I asked about Ds1's lip tie when his teeth started coming through but the GP told me that they would be unlikely to do anything about it until he was older and it was proven to be causing him problems.
I haven't even asked about DS2's lip tie.

DS2's TT was a partial posterior (snipped at 5w), same as his big brother - I think what I'm trying to say is that sometimes the physical appearance doesn't change even though the tongue has been released, so if he's feeding ok and putting on weight ok, then I doubt they'll do anything but it wouldn't hurt to ASK them to have a look, just so you know.

DS was diagnosed very late, at 11 months with TT. All through the earlier months, we both struggled with his feeding. I had endless bouts of mastitis and he needed almost 1 hour on and off to finish his feed because of a poor latch. The poor boy was so exhausted at the end of it that he would just invariably go to sleep.

I tried to switch to formula and expressed breast milk but DS never took to the bottle readily and it caused many stomach infections (we were in a disease ridden tropical part of the world during his first year).

So we got his TT snipped at 1 year by a ENT specialist. While it was a minor procedure, the surgeon used general anaesthesia, which meant that DS was knocked out for an hour or so later.

But as soon as he woke up, he was hungry and I offered him my breast. For the first time in his life, he had a proper latch and was able to finish his feed in 10 minutes. I went on to successfully bf him till he was 2.5 years

Hi OP,

Just another voice added to the consensus that its worth getting it cut. DS had a posterior tongue tie cut at 2 weeks. I wouldn't say the change was instant (had got my hopes up all pain would disappear instantly!) but over the last few weeks (he's now 6 wo) I've seen him start to learn to use his tongue, stick it out more and lift it to the roof of his mouth which is great and after a week or so feeding definitely got better. I'd highly recommend going to some breastfeeding drop-ins once the tie is cut as well as you'll both need to learn to get it right again and I found I got some wonderful support there.

Good luck with your appointment and hope you get it sorted soon - we had about 10 mins of tears and a bit of blood but I think I cried more than he did!

noramum has just jogged my memory - my DS had terrible trouble getting used to solid food. He was hungry for it but could only cope with it if it was pureed smooth. He would gag and vomit on even the smallest lump (and not just a bit of vomit either - he'd bring up everything he'd eaten that was still in his stomach). BLW was a dead loss and he wasn't really able to manage pieces of food until he was about a year old. I've since been advised that his TT probably was the underlying cause of that.

He's fine now and not encountering any problems as a result of the TT - it seems that it's stretched/split on its own - but if I could have saved myself, and him, all that stress, I definitely would have done!

Thumb, I've not seen ds3 tongue move that much. Even when he is crying, it's either against the bottom of his mouth or slightly up.

Surely an experienced midwife (she is specialised in tt and does about 4 snips a week) would have checked for posterior tie too (when she snipped it).

Both ds1 and ds2 have been late with their speech, and as ds3 is an August baby, I'm a bit wary of history repeating and him struggling at school as a result.

The dr wants a follow up appointment (he has quite jittery legs, another story!), which is next week. I think I will mention it to her then.

sheep I thought anterior and posterior tt were two variants of the same thing - that posterior just meant that it was a small tt at the back, whereas anterior it came all the way to the front - therefore if you had an anterior tt snipped, it shouldn't be possible to have a posterior one? I may be wrong though?!

sheep thumb I hadn't heard of such a thing as 'lip tie' - I think I have both tt and lt and so had thought these were normal (I wasn't bf and it has never caused me any problems so didn't realise there was anything wrong). However, DD who is 14 months smacked her face on the table recently and I noticed that the thing that I guess is the lip tie was severed. I was wondering about going to the dr, but just presumed that it would heal itself. However, perhaps that was in fact a lip tie being severed and is a good thing?!

Hi There
My DD was tounge tied. I will let you have our story I hope it helps.

Immediately after birth the midwife helped to latch her on and she was feeding (according to midwife). After an hour or so in recovery I went to the ward and as it was the night after about an hour my husband went home and I was left to my own devices by the midwives.
During the rest of the night I tried to feed my DD and could only get her to latch (or so I thought) on to my left boob. Right boob nipple was slightly inverted. Being a new mum etc didn't ask know there was anything wrong when left nipple was very painful and bleeding. About half way through the night I asked for formula for my DD as she was crying and wouldn't settle and both of us were exhausted.
In the morning I asked for extra help with BF and in fairness I did get lots of help with BF and latching on etc. However, my nipples were v v sore and both bleeding. Anyway, sent home after another night - I was still giving DD a bit of formula and expressing (very painfully).
After going home I was visited by the BF midwife every day as I was still finding it very difficult.
My friend suggested that DD was checked for Tounge tie and I took her to a special BF group where the main MF checked her for TT and said DD was 80%TT!!!
I was very shocked that this had not been checked already.
When DD was 5 days old we went back to the hospital and her TT was snipped. (I was very worried about this as thought it would be painful for her, but she was absolutly fine)
Continued to try BF her but my boobs were so painful by then I resorted to expressing (MWs lent me a fab expressing machine until I bought a medela). Carried on expressing for four months (nightmare). Then DD went on to formula.
I am currently expecting twins and one of the first things I have written on my birthplan is that they are to be checked for TT before I even attempt to feed them!

Good luck

I mean the lip tie and tongue tie have never caused me any problems - not the lack of bf (though that too, but that's for another thread!). The lack of bf was perhaps why it wasn't picked up when I was a baby, and as I didn't have any problems with weaning/speaking/eating ice cream it wasn't ever a 'thing'.

It is possible to have anterior and posterior ties. DS1 had the trio of anterior, posterior and a lip tie.

Sheep re the midwife and the posterior tie - you would be amazed at the number of people who are working with tongue tie day in and day out who do not understand about posterior tongue ties.

Actually, this might be a good time to link to this thread where you will see how many people were given bum information by people who you would expect to have the knowledge but don't.

Fishandjam in general, ties do not break/stretch/disappear. Sure, a thin anterior tie could maybe snap, but the vast majority of ties will not. What happens is that the baby/child learns to compensate to accommodate the restricted movement. Compensating has it's downsides. Imagine you had one knee that would not bend. Sure, you could probably manage to walk, but think about all the stress and strain that you would be putting on the rest of your body when doing the compromised movement. The obvious answer would be to get the knee moving the way it should. Same with restricted tongues.

There are many things linked to tongue tie that people have no idea are related to it - TMJ problems, migraines, neck and shoulder pain/stiffness, clicky jaw, dental problems from tongue thrusting, or high palate (also sometimes caused by tongue tie), speech problems, gastric problems, ENT problems to name a few. Oh and the favourite life skill that they all quote - licking an ice cream

The lip tie thing didn't bother me until the boys' teeth started coming through and they were sooo wide apart, they looked like hippo teeth! That's really when I noticed the thick cording going from the tip of the lip over the gum. DS1's top lip looked like a little baby bird beak (family trait from DH's side); DS2's less so but he still has the thick cording. I was worried it might cause problems with the teeth/cleaning the teeth/speech; but if it is a bad lip tie it can also cause latch problems because they can't splay out their top lip properly so it --> shallow latch. Which, thinking about it, might be one of the reasons DS2 is still causing me problems, 13m on...

But it's quite hard to find anyone who will a) take a lip tie seriously and b) do anything about it.

Mawbroon that's really interesting as like I said I think I have a tongue tie and whilst I claimed to never have had any problems I do have a clicky jaw. Might just be coincidence, but who knows, perhaps not...