Hi. Can anyone with experience of tongue tie come and post a little something about it here please?

[Nappiesgalore]

hello there
you may not know me but ive been addicted posting on mn for a few years now (so im not just some random stranger trawling for no effort research).

i know a woman who is v keen to look at the issue of tongue tie and how it is treated/handled and hopefully improve the way it is responded to by HCP's if neccessary.
she is responsible for setting up the Hackney Maternity Helpline, which has been a great success and a major factor in reducing infant mortality rates in the area, an inittiative that has just won an award from the british journal of midwifery (god i think all that is the correct info! brain like a seive, me.). So she just may be able to make a difference.
shes asked for my help to get evidence that tongue tie IS an issue that affects womens success or otherwise with breastfeeding. (personally i believe so, having experienced it with one of my 3).

SO, if you wouldnt mind posting a brief description of your experiences with tongue tie and breastfeeding, that would be an enormous help.

(the woman is my mum btw, which is why im happy to help)

Hi Nappiesgalore

My ds is 14 weeks old and has tongue tie. He was diagnosed at 10 weeks by a Breastfeeding Consultant, who thinks it is about 25% - I am seeing a specialist at our hospital on Monday to find out more and about snipping it, if appropriate. I went to see the BFC as I have had sore nipples since day one. It didn't matter what I did to try and improve latch, positioning etc. - he was still getting his mouth just round the nipple and making it sore. Obviously the lack of mobility in his tongue made it difficult for him to maintain a 'big mouth'. He also dribbled a lot, bobbed on and off the breast a lot and fed for a long time. He has been fine, putting on weight etc. - just me that suffered! Now that he is bigger it has got better, I guess because his mouth is bigger, stronger etc. But still not great.

So that's us in a nutshell! If you/your mum wants any more info, get in touch. (I live in SW London)

Oh - and the reason I sought a BFC was that I thought he had a tongue tie from week 3 but my MW, HV and GP all fobbed me off!

No idea re the tongue tie, but can I say as Hackney resident that the maternity helpline is a fabulous thing and has been a godsend this pg when I couldn't get hold of a mw in person . So do thank your mum from me!

DS is 16 months now and still BFing with tongue tie. It wasn't spotted until day 4, and then it was merely mentioned in passing by a community MW. I haven't had particular nipple pain but I do remain pretty firmly convinced it was the reason he was such an unhappy baby. He always fed noisily and you could hear him swallowing air - he always had terribly painful wind way beyond the reach of Infacol HVs and GPs totally not interested (because, you know, he's growing ). However, I have been informed there's still a risk of problems with speech development and if he later has to undergo ST and or have it rectified under GA I will be very, very angry that it wasn't identified and dealt with at birth.

Hi Nappies,

I am a Hackney resident (and also fan of the Maternity helpline). Had DS in March 2007 and his tongue tie went undiagnosed for 6 weeks, which meant 7 weeks of agony, anxiety and exhaustion for me and another 7 weeks of stress getting my supply up. Would LOVE to speak to someone about my experience - I feel like I'm always bending people's ears about it but would be thrilled to speak to someone who might be in a position to help change the current state of affairs.

I am actually in the early stages of labour as I type so I can't go into much detail now as you can imagine. I'm not going to be particularly contactable for the next few days, but if you have the CAT facility (I don't but I can receive messages) then get in touch & I'll be happy to speak to you and/or your mum when I get the chance.

Also I will know in the next couple of days whether DD also has tongue tie. If she does I will recognise it myself so won't necessarily be relying on HCPs to diagnose, but I am worried that if it does happen it might not be taken seriously and I might struggle to get a referral to have it corrected. Would be happy to speak to you about my experiences this time around (but fingers crossed she won't have it).

My DD1 had a a tongue tie until June this year and she is 7 years old!! I wish someone had noticed when she was a baby - I was having a horrendous time breastfeeding her and no one thought to check at the time. She also then developed different sounds to substitute "L" and "Th' sounds as this involved putting her tongue in front of her teeth - although the consultant in the summer disagreed with me on this. He reckoned as she was able to actually put her tongue there it wasn't to do with that, but I have my doubts. If you are learning to speak at the age of 1 or 2 yrs you go with what you've got. ANYWAY, we deliberated for ages about getting it cut as it meant a general anaesthetic as she was older, but in the end, she decided that she wanted to do it, and while I was a mess and a bag of nerves in the hospital, she was fantastic, and it was all done quickly and she recovered quickly too. Now she can stick her tongue out as she should! (Hopefully it also means she won't be a crap kisser when she's older! )

I should point out that when I had her, we were in Swansea (where, other than missing that, the treatment was very good) and we are back in Edinburgh now and the op was carried out here.

When I had DD2 last year, it was the first thing I asked them to check. She didn't have one but still had hellish time BFding!

When this one is due next year, I will ask again!

Good luck with it all, hope this helps.

Er...Good luck with the labour poisondwarf!

Cheers me dear!

Ds has a tongue tie. The midwife noticed it once we had been discharged when she was doing a home visit.

I found it very hard to bf. DS was on my boobs constantly but didn't seem to be getting enough milk. The midwife at home was extremely helpful about showing positions to hold him as it wasn't easy because also had an emergency C-section and DS was a big baby so difficult to hold. We did have his name down to get it snipped but it was going to be a 2 week wait.

Meanwhile I got mastitis and Dhs mother died. I was trying to express but I couldn't cope so switched to bottle. We didn't go ahead with the snip as didn't seem much point as I have tongue tie with no probloems and so does my Dad.

Am happy to discuss with someone.

thank you all for your replies they are ALL useful.

i am proud, sally. shes not bad for an old bird

arthy, thanks (know how it feels!) i will certainly contact you if my mum needs it.

thanks effie!

iatemakkapakka - yes quite. hope there are no problems.

poisondwarf - wow! congrats and good luck with the birth and afterwards. if you do have any problems with anything afterwards, do call the helpline, my mum (or whoever else answers, shehas a whole team of mw's on rotation and they are all senior and experienced) will do her best to help. good luck with it all!

thanks slickbird - yes, shame they didnt sort it right off the bat, eh? still, glad she was such a star through the later op and lots better now. your post is helpful, thanks.

rookie - sorry for your loss, sounds like a v stressful time indeed. and thanks for the offer to talk, you may well be taken up on it.

thanks all - all comments welcome and appreciated.

My DC3 had tongue tie. This was diagnosed by a midwife when she was one day old. Because she was my third child, I knew that the latch wasn't right. She was basically sucking on the end of my nipples and it was painful.

The midwife referred her to the tongue-tie clinic at the local hospital (St George's in Tooting) and it was cut when she was 9 days old. The clinic is only on a Monday so there was a little delay in getting it done.

The procedure was very quick and it made a huge difference to breastfeeding. It took a week or so for the previous bruising and bleeding to heal and she had to relearn how to feed and build up supply. Breastfeeding was painless when she got to one month old and she reached her birth weight again at the same time.

I know someone, whose son wasn't diagnosed until he was 4 months old and he had awful problems with weight gain because he wasn't latching on properly.

thanks mungarra, v useful post.

such a shame so many of us have such a hard time, tho pleased it was picked up and dealt with quickly for you

My DS had tongue tie, but because he was putting on weight at a crazy rate they wouldn't do anything about it.

I kept a diary of his feeds. He fed for 16 hours out of 24. After a few days I got soooo exhausted I refused to feed him. His cries did nothing for me. I couldn't care less any more.

My DH in desperation took him out to buy formula in the middle of the night. Came back and gave him 6month+ milk in a no.2 unwashed, unsterilised teat since we had had no prior information on bottle feeding.

For the next few days I mix fed, but since I'd been feeding a mamouth amount before, my supply never waned. I began to express off when he was bottle fed and his bottles became ebm.

I feel I had a lucky escape from being unable to bf. If the tongue-tie had been diagnosed properly at birth and treated, likewise my pph then I may not have suffered lack of bonding and PND.

hth

dd is tongue tied. I noticed it when she was a few hours old and had already breast fed successfully. She is now 7 1/2 months and is still only breast fed (well solids now too, but you know what I mean). Had no problems with latch whatsoever.
Just realised you are looking for evidence that it does cause problems so my experience may not be of any use.

by the way I was told in hospital that our local area doesn't cut tongue ties unless speech is a problem. I have been concerned about this but she feeds so well, can stick her tongue out quite a long way and makes a wide range of sounds, so I'm hoping her speech will be ok

well done your mum!

ds1 has a tongue tie, was diagnosed a month or so in, can't quite remember.
i was in pain bf and had had my position/latch checked, all fine, 'it just hurts sometimes'

i saw a pead (paid privately) who agreed he had tongue tie but beacuse he could stick his tongue over his jawline (over the gumline) it was not interfering with feeding. not so sure myself.
anyway, went on to feed him till he was 1 and got through it.

But what really gets me is my PCT (south essex) will not snip, even if tt is diagnosed early on.
the policy is to wait until 2/3yrs and see if they have speech problems.
then refer them for the snip & GA + speech therapy.
i feel this is the wrong way to go about it as have read that the snip at birth/near birth is quick and painless, no GA and obv no therapy to fix the effects of the problem.

his speech is slightly behind (according to 2.5yr health check) and we are keeping a close eye as referrals take ages....

DD is now almost 7 mths. Luckily, 3 days after I came out of hospital, I went to the BF group held at Barnet General. BF was actually going ok but I went with a friend and I had lots of qs to ask. The first thing the counsellor said to me was that DD had a tongue tie. She immediately referred me to the Royal Free where DD had it snipped when she was 3 wks.

I was really annoyed and upset that it had not been spotted by any midwife or the paedatrician at UCH where DD was born. I had no idea what a tongue tie even was. If I had not by chance gone to the BF group, it would probably not ever have been noticed.

I was lucky as DD was bf fine and put on lots of weight even before she got it snipped. I also did not have any problem with nipple pain. The only thing that improved was that DD started to feed a bit quicker after it was snipped (although that might just have been because she was 3 wks old) and it felt a bit smoother.

The main reason why we wanted it done so much was that we were worried about speech problems in the future and also just general things like not being able to stick out her tongue or clean around her mouth.

Thankfully, we live somewhere where it was easily and quickly sorted. Apparently, it is not checked for my midwives/paedatricians which I think is dreadful. It takes a second to check and 30 secs to snip.

I know someone who has a dd of 2.5 who was having speech problems and they just discovered that she had a tongue tie. She needed a GA to get it snipped whereas, if it was done early on, it would have been a painless and easy procedure.

That's a shame that some areas won't snip the tongue tie when they're v little as it is quick and easier that way. And obviously it is less risk than having to have a general. Incidentally, we did take ours to a speech therapist at about the age of three, but the therapist felt she was progressing fine, despite the L and TH substitute. So for those that haven't had it cut yet, speech may not be a problem. Most people I ever mentioned it to, said they would never have known. One of the reasons DD wanted it cut was the frenulum (the membrane under the tongue)was getting caught between her two bottom teeth and nipping her!

hi nappies, glad to share my stories.

I breastfed ds1 until he was 4.5 months old. in that time I did not have one single pain-free feed. In fact, they were agony. every single one. he couldn't stay latched on, I dreaded feeding him. he started dropping centiles where I was putting off feeding him, or, when I did feed him I would have to stop him before he was ready because I couldn't take the pain any longer. I ended up with split nipples on both sides that just would not heal
out of all the midwigves, healht visitors, and BFC's I saw not one of them checked for tongue tie. It wasn't until I read about it on here that I realised what it was. and he definitely is it was too late when I found out.

ds2 was born a year ago. latched on straight away and it waqs obvious he had the same thing. midwife checked and confirmed he was tongue tied. I persevered for a few days to see if we could manage without having it snipped but the pain got worse. I requested a referral to have it done and we got it. Had to wait until he was 3 weeks old though! again, it was agony, I used to cry through feeds because it was so painful, even with the techniwques I had been shown to help him stay latched on.
anyway we had to travel over an hour away to get it done because nowhere nearer has anyone who can do it! madness.
it was snipped, and he didn't even wake up! was fab. we haven't looked back, still bf-ing now the service we received was fantastic (at st richards in chichester). but really ought to be available in EVERY hospital.

I strongly believe that all newborns should be checked for tongue tie, and have it snipped BEFORE it causes an issue for mum. I did a lot of research on it when getting ds2's done and couldn't find a single bad thing that could come from having it done, so I fail to see why it can't be done as standard. it's such a simple and quick procedure

will add: the lady in chichester said they will ALWAYS snip a tongue tie if it is causing probs with breastfeeding. they don't just wait to see if it affects speech
she is v pro-bf and runs a bf group too I think

Hi Nappies. DS had a tongue tie which wasn't spotted until he was 5 months old. Too late for our breastfeeding which by then had come to an unhappy end.

He was an extremely difficult baby to feed from the word go. It took two of us to swaddle him, and hold him down enough to latch him on. He would keep slipping off and he made me so so sore. Breastfeeding was agony actually, so we ended up mix feeding until he was 4.5 months when the last of my milk finally dried up.

When the tongue tie was diagnosed I was told it would have made no difference if it had been spotted earlier, as hospital policy was not to snip. Thankfully, the tongue tie snapped of it's own accord some time before DS was year old.

If you search for my posting name and "tongue tie" you'll probably find loads more about our experience. A lot of the memories of that time are fading now.

Oh wow thisisyesterday - I could have written your post. I remember so clearly dreading each and every feed - it was pure hell. I'm really pleased you were able to use your experience positively when you had your second baby. That gives me hope for next time.

gawd i remember that feeling of dread and hell. i snapped when i was gritting my teeth and trying to see if the pain would subside a little just after latching on... and then deciding it wouldnt, pulling him off, and blood dribbled down his chin and from my nipple.
that was with my first.
his must have snapped of its own accord coz it suddenly got lots better... not great but lots better, and i fed him till abotu 5m.
i never even heard of tongue tie till i had my third
god, that first 7 days (sounds like NOTHING written like that) of my first baby was literally made HELL by the feeding problems. which is sad i think.

it is sad isn't it nappies? because having a baby, and especially so when it's your first I think, should be something you look back on and can cherish. and so is breatfeeding itself, it ought to be such a special experience.
and yet for so many mums it's something they look back on and just hate. It made me really not enjoy the first few months of ds1's life, which is so sad.

twinklemegan, it's def better the second time round because you KNOW what you're looking for. when ds2 began feeding it all came flooding back, it felt EXACTLY the same as feeding ds1 and I knew what it was instantly. I actually had this feeling of dread, because I knew I coulnd't bf a baby like that for very long, and I was so desperate to feed.

I am now pg with number 3 and will have baby checked immediately after birth and I will be insisting on a referral for the snip straight away if s/he is TT. that way if I have to wait and it turns out there are no probs I can cancel it, if there are probs then i'm already on the list.

good for you yesterday.

is there anyone else with any stories to tell please?