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)

DS had a tongue tie which went totally undiagnosed until I noticed it myself when he was about 8 months - as I realised he never stuck his tongue out further than the edge of his bottom lip and that when he pushed it forward he had a fork.

I had had terrible pain with bfing which lasted for the first 15 weeks, despite me seeing doctors, health visitors, bfing drop in centres etc etc. I am fairly clear in my own mind that he had a poor latch due to the TT and then as his mouth grew bigger it mattered less. But it had been v bad pain and I had only carried on with bfing through bloody mindedness and mumsnet support!

It wasn't until he was on solids (and still bfing btw) and I was talking to my DH's family that MIL told me DH's brother had had a TT and had it snipped at 18mo.

I pestered the GP and finally got a sympathetic HV who referred me to the paeds but his tongue did eventually sort itself out while I was waiting for his appt to come around. He still can't stick it out very very far but it is not affecting his speech or his eating so I decided to leave it.

But I will def be watching out for this with DC2 (due Apr) as it did make the first few months of bfing hellish.

DS had tongue-tie. Was missed in the hospital, but I took him to BF Clinic on day 4 after an agonising day three when my milk came in and he couldn't drain them properly. I was in agony. He was referred to the local TT clinic and they snipped it a week later. DH has TT and never had it snipped. My mum had TT and had it done under GA as an adult.

thanks folks, this is all helping.

Hi Nappies,

If you remember I posted earlier in the thread (whilst I was in labour!) and I thought I'd give you an update.

DD was born at 12.23 on Saturday 6th December and I was delighted that her first feed was pain-free (with DS it had been excruciating from the word go). I was so relieved that she didn't appear to have tongue tie. However, after a few feeds I started to suspect otherwise and each feed was becoming more painful than the last. I wasn't 100% sure if it was tongue tie as it was in no way as obvious as DS's, but it was exactly the same kind of pain (i.e. more in the areola than anywhere). Although her latch was not great and I ended up with cracked and bleeding nipples, she was sucking and swallowing well (DS had fed poorly and lost weight).

After a few days the pain was getting more and more unbearable (I often felt I was going to pass out) and I was taking more painkillers than I was entirely comfortable with. I was starting to be convinced that it was a tongue tie, but the midwives disagreed. Anyway on the Friday (DD was 6 days old) I phoned your mum on the Maternity Helpline and explained the situation and she was kind enough to refer us to Mr Patel's tongue tie clinic at Kings College (where I had DS done) on the strength of my description and we got an appointment for the following Tuesday (ie a week and a half ago).

Mr Patel confirmed the tongue tie and it was divided there and then. The pain was 90% gone immediately - there was (and still is) some pain on one side, but it is completely bearable and I am taking painkillers only in the evenings, and fewer each day. Mr Patel insists that you see a bfc as a matter of urgency, the following day if possible, but they are in short supply round here unfortunately. I did manage to see an infant feeding specialist in another borough and that also helped.

I'm confident that we'll be feeding pain-free in a matter of days, and all thanks to you and your mum. I just wanted to say how grateful I am to you for starting this thread (I wouldn't have known who to turn to otherwise) and to your mum for taking me (and the issue of tongue tie) seriously. It's no exaggeration to say that you've both made a massive difference to my life and enabled me to continue to give my DD a great start - not sure if I could have gone through what I did with DS again.

Hi PD, just saw this! Was wondering how yo had got on with the tongue tie, SO pleased it has been sorted. Have a great Christmas - we must try and meet up in the New Year (still here, still pg)

Hi Effie,

Been out of circulation for a while - will catch up on the Dec 08 thread as soon as I can (have been reading, just can't keep up with posting!) but just in case I don't get the chance in the next day or 2 I wanted to let you know that I'm around in Hackney on Christmas Day (but not Boxing Day) in case of emergency (even if it's just looking after DS for an hour while the rellies get here). Seriously, if you're stuck don't hesitate to give me a call.

Anyway, see you on the December thread soon! x

That's very kind - I'm sure we won't need to take you up on it but it's very helpful to have emergency backup! I have told the baby that Christmas Day is out, unless given plenty of notice

Hi nappies, have only just found this thread so hope you're still looking for stories.

My DS was born in June and diagnosed with tongue tie within hours of his birth. I had never heard of it and had no idea it would affect bf and was so tired from a traumatic birth that I didn't really take in what it meant.

My DS never latched and I was never able to feed him. For the first four days of his life he appeared to be feeding (completely pain free and I suspect he wasn't really 'attached' to me properly at all) but on day four he was weighed and we found out he'd lost 13% of his body weight and was severely dehydrated. I was devastated.

We had nothing prepared for bottle feeding because I wasn't prepared to entertain the idea, so we had to rush out and buy bottles and formula and feed him straight away. I then attended a bf clinic the following day and was given a pump. I was told DS had a tongue tie and I had flat nipples and because of his lack of nourishment feeding was a priority rather than worrying about bf. So I expressed for two week and fed him ebm - every time he cried to be fed I would put him to my breast and he would hit me and push himself away and dh would take him and feed him with my milk.

After two weeks of this, no sleep, constant stress and constant crying (from me ) I jacked it in.

I still have very deep unresolved feelings about my inability to bf and feel very very sad about it. I wish someone had helped me understand about the tongue tie and getting it snipped (this was offered only after I had given up feeding).

Good luck and thank you x

When DD1 was born, I had difficulty feeding her. When the midwife came out, I asked her to check my latch and show me what to do. She said my latch was fine, but I knew it wasn't & could hear clicking.

Having worked in a neonatal unit, I knew clicking= poor latch.

As the midwife was talking to me, I said "is that a tongue tie?"

Midwife said that it was, but in our area they only intervene if it affects speech. Having said that, when I pressed her, she gave me the number for the neighbouring area's Breastfeeding Counsellors, who also happened to run the tongue-tie clinic . You would normally have to be referred to the consultant via your GP as a private patient, so pay £50.

By phoning this lady, I was able to have an appointment when DD was 3 days old - they had run out of scissors which accounted for the slight delay.

I took her along, they looked at her, and said that she had an 80% tie, and wanted to take her away to snip it. I said that if they were going to do something to DD, I was going to be there. They agreed, so I held her swaddled (asleep) while they snipped it. She woke up, cried out, then fell asleep again.

I took her back through to the lounge area, and had our first really successful feed.

My DS1 was tongue-tied & diagnosed at 1 day old as it was almost to the tip. I needed to hand express & feed by syringe to prevent weight loss as he really couldn't bf himself.

We moved onto feeding expressed milk & bottles within a couple of days and I tried constantly to achieve latching on. Unfortunately he became distressed at the sight of my boobs and was so much happier with a bottle.

The bfc organised the snip when DS1 was 12 days old (St.Peter's, Chertsey, Surrey)and by this time he wasn't interested in bf and was a confirmed bottle boy. I expressed for 8 weeks.

Very pleased diagnosis came early & op was offered immediately in my area.

Hi,

DS was born Feb this year and I started out exclusively bf-ing. He regained his birth weight fairly quickly (having not lost much in the first place) but at about 3 weeks, I was feeding all the time (literally on the couch with boob out all day long) but he would scream even after all those feeds, only to be satisfied by 5 oz of formula (given very reluctantly at the time!). I also had pain feeding from one of my boobs. Went to a bf-ing clinic and saw a very experienced counsellor there, she watched me feed and could see fairly quickly that DS was TT. However, she didn't think it affected his feeding too badly all things considered.

I got a referral and DS got his tongue snipped that week. There was a bit of blood but it was really quick. Unfortunately DS's feeding didn't really improve. I tried bf-ing for longer but gave it up at 6 weeks after a lot of tears. The bfc was very nice and very supportive actually. We tried everything she suggested. I do think that I have a medical condition (a pituitary tumour) that could have affected the quality of my milk. Even the bfc said to me towards the end that I have tried as hard as I could and I should not feel guilty about giving DS formula. She was actually concerned enough about my state of mind that she insisted my HV to come and see me. I will try bf-ing with my next one but would want him/her to be checked for TT early on as that would have excluded that quickly as a problem so I could have concentrated on getting my milk supply/quality up.

Ax

Hi,

DS was born Feb this year and I started out exclusively bf-ing. He regained his birth weight fairly quickly (having not lost much in the first place) but at about 3 weeks, I was feeding all the time (literally on the couch with boob out all day long) but he would scream even after all those feeds, only to be satisfied by 5 oz of formula (given very reluctantly at the time!). I also had pain feeding from one of my boobs. Went to a bf-ing clinic and saw a very experienced counsellor there, she watched me feed and could see fairly quickly that DS was TT. However, she didn't think it affected his feeding too badly all things considered.

I got a referral and DS got his tongue snipped that week. There was a bit of blood but it was really quick. Unfortunately DS's feeding didn't really improve. I tried bf-ing for longer but gave it up at 6 weeks after a lot of tears. The bfc was very nice and very supportive actually. We tried everything she suggested. I do think that I have a medical condition (a pituitary tumour) that could have affected the quality of my milk. Even the bfc said to me towards the end that I have tried as hard as I could and I should not feel guilty about giving DS formula. She was actually concerned enough about my state of mind that she insisted my HV to come and see me. I will try bf-ing with my next one but would want him/her to be checked for TT early on as that would have excluded that quickly as a problem so I could have concentrated on getting my milk supply/quality up.

Ax

Ds (born 2005) had a tongue tie, though no-one realised. He seeme constantly hungry in the first few days, but v frustratingly for both of us didn't seem to actually feed well when offered the breast -he came off all the time and it hurt. He fussed a lot and went without poo for 4-5 days. However, I had no clue what was normal, everyone said my technique was good and all looked fine and on day 3 NCT counsellor simply said in answer to my Q about how do I know when he's had enough "keep offering breast whenever he seems hungry".

He was 7lb11oz at birth and when weighed on day 6 had lost a whopping 1.5lb, i.e. 20% birthweight. MW then checked and said oh, no tongue tie. Told to top up with formula, I cried so eventually she offered to refer us to a bf clinic. We went the same day and they diagnosed a tongue tie and referred us for a snip. They also got me expressing with a double pump and observed a feed and said ds was only latching momentarily then slipping off.

On day 10 ds developed a spurious rash. MW referred us to out of hours gp, but they can't see babies under 12 months so off to paediatrician at A&E. They couldn't care less about rash, but horrified at weight loss (even though ds now gaining on EBM). Insist on formula top up. Ds collapsed and was unrousable. Chest X ray, lumbar puncture and instant IV antibiotics x2, alongside hospital admission. It appears he was dehydrated, as they found nothing at all wrong with him except the feeding problems. We missed our snip apppointment because we were stuck in a different hosp where they don't do the procedure . Prescribed domperidone for poor supply, as lack of suckling had meant it hadn't established properly.

Top up with about a litre of formula in total for just over a week. Expressing round the clock for 8 weeks and continuing to work on bf. TT snipped at 4 weeks. Eventually stopped domperidone at 19 weeks and then exclusively normally bf until 24 weeks when we started BLW.

Ds still breastfeeds 3-4 times a week at 3.5 years.

So, because of TT and crap bf support, ds was hospitalised with several unecessary invasive procedures. He received formula that I did not want him to have and also unecessary IV antibiotics. He was also small, skinny and his growth was slow in the first 6 months.

Oh yeah... and the impact on me was extreme anxiety about him and his weight gain, as well as the burden of pumping night and day for weeks on end, restricting me to the house. The knock to my confidence was huge and it took a long long time to get over it. For over 2 years I felt guilty about having starved my baby, until someone helped me to come to terms with it. I felt I had failed him in my most basic responsibility as a mother.

I'm just glad I didn't give up bf, as personally I would have regretted that much more and found it even harder to deal with.

Sorry, I have to add, the feeling expressed above was my feeling about providing food for my baby. I'm not saying anyone else should feel that breastfeeding is their basic responsibility, it's simply that's how I always felt about it, because everyone in my family and those I knew breastfed, so for me that was the only option, IYSWIM?

sure thing nappies.
My DH had an untreated tongue-tie, doesn't bother him in any way really and apparently didn't affect his own bf'ing - but I was aware that there might be a chance he would pass it on to DS.
So when DS was born, I asked them to check - no tongue-tie, they said.
Next day, was having latch problems - asked again - no tongue-tie, they said.
The next day, still having awful trouble getting DS to latch on, the lactation specialist came to see me, suggested bf'ing lying down, I asked her about the possibility of tongue-tie and she ran her finger under DS's tongue and said yes, he has a partial tongue-tie.
Didn't refer me immediately to Paeds, they said see how it goes and if still having trouble, we'll refer you.
1.5 weeks later, senior MW (also a bf'ing expert) visited me at home and asked to see me feed DS - still not quite right (was taking 2 hours to feed him) so she did the referral.
Saw a very nice Paed consultant the following week who said DS's tongue-tie was very minor and probably snipping it would make no difference, but he would do it anyway if I wanted him to. I said yes, cos I wanted to be sure I had done my best for DS in terms of bf'ing, so he did it (1 min, no pain, no crying, touch of blood, DS fed straight after no probs).

It made quite a difference - but the Paed had said sometimes snipping really minor ties makes a big difference, and sometimes snipping really major ties makes no difference at all, an important point to be aware of, I think.

HTH

oops, forgot to mention the extreme pain of bf'ing before he had the tie snipped - like having razor blades sucked through your nipple - ouch! Took a while to settle down while he adjusted to the new latch as well, so a good idea to get it done asap.

Oh yeah, I almost forgot... dd had a tongue tie too (born 2007), but only a v minor one. We were referred by a BfN supporter to have that snipped too when she was a couple of weeks old. It seemed to make a difference to how far back she could tilt her head and open her mouth more than anything else. She didn't have any of the catalogue of issues ds had.

The day of her snip was awful though, as we were told to bring her hungry, but then I misjudged this a bit and she was already starving and screaming when we arrived and then the clinic was running 45 mins late. My nerves were in pieces .

Emmadilemma, mine was done at St.P's in Chertsey as well - this is a good hospital for doing it because they recognise it and do it with no fuss; apparently many other hospitals don't think it's necessary and won't do it so people end up having to go to a private clinic and pay up to £120 for it to be done!