Tongue tie

[Moos]

Afternoon family roomers

My one-week-old son has just been diagnosed with a posterior tongue tie. We've been to the specialist at Dulwich Hospital, need to go again for the confirmation appointment and are getting lined up for an appointment to have this corrected.

We are relatively fortunate in that he has already taken well to breastfeeding, albeit he feeds very slowly (each feed at least an hour, and often more like 2) and slips off the latch quite a lot - ouch! Fingers crossed he is thriving in spite of it, but I have hopes that the correction will improve his latch and help him be less windy, poor little bean.

The specialist also suggested that the difficulties I had with learning to feed my elder son 3 years ago (he struggled to latch on and was very windy as a small baby) may well also have been related to an undiagnosed tongue tie, and even that the difficulties my own mother had with feeding me and my brother could be connected! I had not previously known this was a genetic condition, nor that so many apparently go undiagnosed.

Anyway, just wanted to mention it especially to anyone with a tiny one or who is expecting a baby soon to ask your midwife to check whether there is any sign of tongue tie. Mine only checked because I, being very conscious of tongue tie with various friends with tongue tie babies, had observed to her that my son's tongue doesn't stick out very far. Before then, everyone had just said that we had a good latch and all seemed OK.

[Mellors]

I absolutely second that.

With my son (now 4) he used to feed for hours and never seemed satisfied, always struggling and crying. I had no idea why just assumed it was part of breastfeeding being hard. I presevered until 3 months when he had lost so much weight I just had to put him on a bottle, which he took to fine (relieved no doubt!)

With my daughter (now 2) she really struggled to feed at all, to the point at which she lost so much weight she was "failing to thrive" from an early stage. i had to express every feed, and eventually at about 5 weeks old a midwife diagnosed a tongue tie, and said she was sure that had been the problem with my son too.

I had no idea what one was, and nobody in either of our families had ever had any problems to our knowledge. Apparently it affects as many as 1 in 10 babies and most don't get diagnosed, the mums just assume they can't breastfeed and give up (as affected babies can feed fine from a bottle due to the different sucking motion).

There is an amazing clinic which runs once a week (used to be Tuesday afternoons) at Kings where they snip them and sort it out. Its a tiny procedure which they hardly notice, and the difference is astonishing.

I do hope that your child gets sorted, and mums out there, if breastfeeding really does seem an immense struggle, painful, or they arent putting on weight, do ask somebody to have a look - it can be diagnosed quite easily (in my daughter she clearly had a "heart shaped" tongue where the tie was pulling in the middle bit), and fixed with no problem. I'm amazed now how many of my friends it has also affected.

Good luck!

[Pickle]

I'm another tongue-tie "survivior", with my son finally being diagnosed at about 6 weeks old (and due to administrative c*ck ups it wasn't corrected until he was 8 weeks old).

Similar problems - fed for hours and hours, never seemed satisfied, weight continued to drop off him. Despite having been seen by the paeds unit at Kings regarding his weight loss ("best to put him on formula, he's obviously not thriving on the breast") it was a student midwife who finally realised what the problem was. His was quite a mild tie, no obvious heart shape to his tongue, but it wasn't until afterwards that I realised he had never stuck his tongue out before it was fixed. Even a mild tie can dramatically affect breast feeding.

Due to the operation to correct it being so late it took us a long time to finally be able to breastfeed successfully, but with help we managed it.

It is a really common condition, but missed far too often. I refused to leave hospital after I had #2 until Claire Kedves had looked in her mouth!

[sophiechristophy]

does anyone know if tongue tie is more common in boys? I have two friends who had sons with tongue tie, and the posters so far have all had boys? just a coincidence? S xxx

[Curmudgeon]

you know that midwives used to keep a sharp fingernail that they'd slip under the tongue to release any tongue ties - it's a rather common thing

of course I'm not advocating that treatment I just found it interesting

[The Nappy Lady]

Hey Moos,

CONGRATULATIONS! Sorry you've got to cope with the tongue tie, though sounds like you are dealing with it really well. Hope it gets sorted soon. Can't believe baby is here already, where has the time gone?

xx

[anna_r]

My second daughter had posterior tongue tie, undiagnosed until she was over 4 weeks old, despite me being in complete agony at every feed, nipples completely torn to pieces. She was putting on weight really well and the latch looked good so everyone kept telling me it was fine and to try different positions etc. This is even though I had successfully fed my first daughter and knew this felt different. Eventually after phoning my midwives in tears and pressing for them to make me an appt with Claire Kedves she diagnosed it. I burst into tears with relief after finding out. Then I had a panicky few days waiting to see whether I could be fitted into the next Tuesday tongue tie clinic (I truly dont think I could have continued for another week). By this time I was doing a lot of expressing to give boobs break.

Tongue tie clinic went smoothly (although its definitely not a terribly fun experience) however by that time I had developed two different bacterial infections in the wounds as well as thrush so had to treat those with a variety of antibiotics and fluconozole etc. At the clinic they ask you to feed every three hours for five days to encourage baby to learn to use their tongue and I found that REALLY hard, having been expressing a lot and giving boobs a break. Was in tears with every feed and breasts didn't seem to be getting better at all. After five days were up I switched back to expressing for a week while my boobs healed. Also used those novogel pads Claire recommends. Eventually started to see improvement.

Anyway, the good news is that we are still breastfeeding at 3 months with no pain at all now. In fact my daughter had now decided she loves the boobs so much she is refusing bottle (despite having had it a lot in the first two months). I came so close to stopping (I was even prescribed the pills that make your milk dry up since the GP was nervous I would develop an even worse infection if I stopped by pumping down). I'm so happy I did push through but really had to fight for the support. I made appointments with my GP almost every other day and they were actually very supportive(although I had to tell them how much fluconozole to prescribe - you need a STAT loading dose on the first day). The difficult thing is that when you get nipple damage you are almost certain to get infections, and working out whether it is bacterial or thrush is really difficult, results from swabs take ages and often give false negatives and the treatments are opposite to each other.

Anyway, bit a ramble. Have been meaning to post about this myself for a while. I found the old tongue tie thread on here really helpful for advice at the time. Its called something like 'Baby fighting to latch on'.

[GinaG3]

Congratulations Moos. Lucky you that baby took to breastfeeding well regardless of the tongue tie. Hopefully it will be sorted soon. Some tongue ties cause such problems with feeding, at Peckham BF cafe we see a lot of tongue tie and it can be so frustrating (and upsetting) to see mother and baby really struggling with feeding. Glad your not having any problems. Wont be long till you get seen at kings the turnover is pretty quick. Its a shame tongue tie cannot be cut as soon as baby is born, but things like this are not checked at birth. Feel free to pop down to Peckham BF cafe (Peckham Library, 5th floor) Thursday 10-12 even if you would just like to chat with ladies who have been through or are going through the process.

sophie - tongue tie is indeed more common in boys than in girls. But a lot still go undetected so we cannot know the exact figures.

[Countjc]

Moos congratulations on your baby and I hope you manage to get things sorted out quickly. I am really pleased about all the success stories on this thread with breastfeeding after a tongue tie. I was the one who started up that old thread when my boy wouldn't latch on. Unfortunately I wasn't such a success story and just thought I would put up what happened incase other women have similar issues.

After posting on here and so many people suggesting it was a tongue tie, it was finally diagnosed at about 4 weeks. By that point we had been to see so many midwives and bfeeding cafes (apart from the Peckham one which I am gutted about as think they would have probably diagnosed it straight away!). Anyway we were being told it was wind/a bad latch/ just normal cracked nipples etc. After the op my son took really well to the breast but unfortunately so much damage had been done and I had severe breast thrush/double mastitis and another bacterial infection. I took antibiotics, fluconazole and another thing for the infection but it would not shift for ages so I expressed and expressed. The problem was that my nipples would not heal- I lost about 2/3rds of the tissue there. Apparently thrush makes it harder for the tissue to grow back normally. I continued to express to 3 months but still no healing and so I gradually wound down and switched to formula. We hoped that this would then allow the tissue to heal but it still hasnt - baby is now 6 months. Clare K and one of the other lactation consultants are worried that I may not be able to breastfeed another child which I am gutted about.

Anyway sob story over, point being is to be really careful about breast thrush. One of the things suggested for cracked nipples is to rub breast milk on them which is fine unless you have thrush which thrives in a sugary, moist environment. Breast thrush symptoms are needle like pain in the breast tissue and nipples that won't heal. You can also check your baby's mouth for a white covering and bottom for nappy rash.

My final comment would be that initially I would not consider formula as an option which I now feel stupid about but I was so desperate to breastfeed and all the midwives were pushing for it, no one even suggested giving a bottle. I felt so so guilty about formula feeding and a bit of a failure which I now know is totally ridiculous but was under so much pressure. The sad thing is that had I bottle fed sooner then I might have given my nipples a higher chance of healing. Dont get me wrong I am totally pro-breastfeeding and understand that 'breast is best' but only if it is working for you. It ended up being the GPs that talked me round and made me realise that the best thing for us was bottle feeding but I felt that all the HV and midwives could not see this.

Anyway, I hope I haven't scared anyone with this post, more of a cautionary tale I hope and best of luck to those having the op.

Tongue ties suddenly seem to be v. common but I think someone else mentioned that they used to be dealt with in hospital by a midwife and so people weren't aware of them. I dont know why they aren't checked for at Kings as they are at Tommys. I think it is worth mentioning when in hospital.

Oh and I saw my midwife the other week and she said there are now 3 clinics a week running which is great news.

[Moos]

Molly and Gina, thank you very much, hurray hurray! :-)

Twosling is feeding well (fingers crossed for today's weigh-in) but it is getting more painful, I must admit. I will follow Claire Kedves' advice and ask GP to prescribe Novogel, and hope to avoid the more serious problems anna-r had.

[Moos]

Countjc, crossed with your post - what a wringer you've been through. I'm so sorry.

[anna_r]

Goodness me Countjc I can only imagine what that must have been like. Well done you for persevering for so long and totally agree about formula sometimes being the best thing to help maintain your sanity. We did a bottle of formula a night while I was expressing full time as its very difficult to exclusively pump enough when you havent got any stores built up in freezer. Fingers crossed about you continuing to heal and being able to breastfeed in future, if you want to. I know so well that feeling that you are just not healing and it is awful to keep looking down and seeing such damage. x

[anna_r]

And congratulations Moos on your new little one. Hope the tongue tie issue resolves itself very easily after clinic x

[Dulwich Born And Bred]

Congrats on the newest addition!

I spotted my son's tongue tie at a week old. Funny enough it was on my to do list when I counted his fingers and toes, but in my drugged haze after labour I did not check. ( I put it on my to do lists because I know so many babies born with tongue tie and people are not aware of it).

My son used to gag so much when feeding, and I knew something was wrong. I checked his tongue and he had quite a bad tongue tie. Showed my midwife who agreed, and they said I would have to wait until my son was 6 months before he could go to the tongue tied clinic to have it snipped. I did not want to wait that long and struggle with feeding him and his gagging, so I begged and hassled and he got his tongue snipped at 4 weeks old, in hindsight it was probably too young because he had an infection a week later and ended up in hospital for a few days ( we thought it was a UTI but it was confirmed the infection was probably from having his tongue snipped).

He came on leaps and bounds after.

My nephew was tongue tied, but as he was formula fed it was not an issue, however at the age of 13 he had his tongue snipped and is glad he did.

I have to say I had no problems with sore breasts etc because I slapped on the lanisoh non stop from the moment I started breast feeding, so whereby they were just tender from having a baby on them for hours on end, they soon toughened up and breastfeeding was not painful ( apart from a few lumps which I had to massage out, ouch ouch!!) but I never needed treatment for anything breast related so do try and slap on the lanisoh asap and constantly.

Hope it gets sorted.

[alieh]

That's great that you have an appointment for "the snip"! It made such a difference for us, though don't be disheartened if you don't notice it straight away because baby needs time to learn how use his/her new tongue. I'd say by a week after the operation, breastfeeding was virtually pain free for me. We had it done when my son was about 4 weeks old.

The only thing that saved me in the days/week leading up to the operation were nipple guards, novogel and silverette healing cups. And sometimes paracetamol before feeds. I know people freak you out about using nipple guards, but without them I wouldn't have been able to keep feeding and we found it easy to wean off of them once the tongue tie was resolved.

The genetic link is interesting because my mum BF me no problem, but my sister she could not get to latch so matter what she tried. It's possible that my sister had an undiagnosed tongue tie, but grew out of it (common apparently).

[snowboarder]

Cannot understand why, if SO common, babies are not routinely checked for this? Bizarre. Always wondered about little sb who seemed to feed ok and gain weight, but only in the last month or two has he stuck his tongue out.

[Gussy]

Countjc we are very similar to you and our story is very long and it has been very stressful time. Managing my sons tongue tie has dominated our family for the past 6 months and been extremely hard. When I have more time I really want to start up a blog or webpage for information and support for mums. I spent hours on the net trying to get answers, and while there are a few good websites I really think first hand experience is lacking given how common tongue tie can be.

I was fortunate with my son that I knew straight away that something was wrong when he wouldn't latch after birth. I had a rocky time bfeeding my daughter and regretfully stopped after 2 months. This time I was SO determined to make it work that I called the midwife to check him straight away as we had a hard night of him crying for food but unable to maintain latch. I was v.sore already after 24 hours. I remember asking the mw to check for tongue tie but she said,no, it wasn't and to keep going. The next 24 hours were the same and my nipples began to deteriorate and split it was so painful. I knew something was wrong so I called a LC and she said straight away it was TT. Within 24 hours I had a private TT lac consultant around to my house and she did the procedure on my 3 day old boy. I was so relieved, but to my absolute disappointment there was no improvement in his feeding and it was still very painful. I was told to massage his tongue and do sucking exercises for the next 2 weeks. I did and it made no difference. Well, after another week my nipples had had it. Baby was sicking up blood and nipple and I got mastitis. I was distraught as I didn't want to stop, but the mw's were all saying to give myself a break and give a bottle.

I ignored this and purchased some nipple shields and I have to say they SAVED THE DAY. I managed to continue feeding without pain and my nipples began to heal. I kept trying without the shields but it was too painful. LC no.3 said my son had posterior TT and it needed cutting again. Now here's where I start really stressing. Why do it again if it didn't work the first time? He was now 3 months old and very alert and the thought of another tongue cutting filled me with dread. Add to this that baby Gussy was V.V.windy - like colic, but not continuous crying, just griping in pain all night and wouldn't sleep. I was convinced he was windy because of his poor latch and he swallowed an awful lot of air. In the meantime I took him to a paediatrician to rule out any other 'wind-related' problems. I did a dairy free diet for 2 weeks (grim!) and saw a speech therapist to assess his feeding. He advised holding his cheeks when he was feeding from me (it didn't help!). Both said to me that 'I'd given him a good start' and to think about giving formula. The paediatrican wanted him to go onto Nutramigen. I still wasn't giving in! We were managing on nipple shields and I was enjoying feeding him as he was, even if I dreaded how windy he would be after a feed.

I then went on to see a LC at the Royal Free who wanted to clip the tie again, but I hesitated and didn't go through with it. In this time I did a lot of calling to various people - Mervyn Griffiths (trailblazer of tongue tie based in Southampton) but he was away on holiday and I would have to wait for 3 weeks.....a consultant in Oxford (he used local anaesthetic but refused to see my son as he was now over 4 months old). This then led me to Dr Patel at Kings. It took me 3 weeks to get an appointment with him (as everyone was on holiday), so now my little man is 5 months old. Their cut off time for the procedure is 6 months old, after which time they recommend a general anaesthetic. Dr Patel was excellent and he totally knew his subject and put me at ease, I wish I'd seen him earlier. He told me my son still had a degree of TT but he wasn't happy to carry out the procedure on him as he was 5 months old and too alert. He said that it should improve as he gets older. If I was happy to continue bf with shields then I should, or just think about stopping (NOT an OPTION!). So I came away relieved that my little man didn't have to go through it again, but also upset as there didn't seem to be any solution to his latch problems without surgery with anaesthetic after 6 months. By this point I was on my knees with exhaustion and only managed to sleep by feeding him and then going into the front room to sleep on the sofa so I couldn't hear him griping with wind :(

So, my goodness, I've gone on so much, sorry, but to bring the story up to date, baby G refused to feed from the shields around 6 months and just wanted me. I was secretly pleased, but it continued to hurt and to this day it can still be a tad painful, especially now he's got 4 teeth. BUT, we are still going and I'm not stopping. My nipples seem to be used to being squished, and occasionally they blanch and bleed a bit, but the pleasure we both get from feeding is like nothing I thought. I love bfeeding and appreciate it more for what we've come through. His wind has got 100 times better since he can sit up and while he still swallows a lot of air from me, he just lets out gigantic burps afterwards and is fine :)

One other thing I wanted to mention was that my little boy also has an upper lip tie. I diagnosed it myself when I saw his top lips curl under when latched to me, rather than out (fish-like I think is the phrase!). I showed a LC and she agreed with me. It is quite rare, but apparently more common if the baby also has posterior TT. Now there is VERY little information on this, particularly in the UK - dentists in the US seem to diagnose and treat this fairly frequently, with a snip, but everyone I spoke to didn't know how to handle it. I was convinced this contributed to his poor seal around the breast and subsequent air swallowing. Poor chap really wasn't designed to breastfeed!! :)

Anyway, I've typed far too much and feel very selfish for this outpouring, but I wanted to express that tongue tie can be a tricky thing to deal with, especially when you are passionate about breastfeeding and you are faced with many health professionals who don't know how to spot it or support you, especially emotionally. My heart goes out to all of you that have gone through it and come out the other side or have sadly had to stop. I think you are amazing and I just wish there was more support on this topic. x

[alieh]

That is amazing Gussy. I'm not sure I would have had the guts/pain threshold to continue if my son's TT procedure hadn't worked. And same re: nipple shields here too - would NOT have made it without them.

Snowboarder, most midwives are pretty good at checking for tongue tie these days but some tongue ties are not as obvious or straightforward (for e.g., the posterior tongue tie, which my son had too). In my son's case it took a lactation consultant to spot it, and then Dr. Patel confirmed it. But even after the LC diagnosed it, the midwives were looking in his mouth saying "there is no way that this baby is tongue tied". It's not their fault, as they can't be expected to be experts in everything but it was quite annoying because they spent 3 weeks drawing me pictures of aereolas (sp?) and telling me over and over again what a good latch looked like, when my nipples were shredded and hanging off, and my baby feeding for hours at a time but still not gaining weight. I just wish they had suggested I see a lactation consultant a bit earlier.

[Countjc]

Gussy you brave, brave lady. I cannot believe that you went through all that and that is amazing that you are still managing to feed. Congratulations.

I think we do need to get our stories out there as Alieh says, it's often hard for the midwives to diagnose and quite a few drs hadn't heard of it (my dad included!). I managed to diagnose my friends baby having one and have encouraged as many people as I can to mention it when in hospital having the baby. We are lucky to be so close to Kings as when I went in for the op there were women who had come from miles away.

[bli]

Wow, this all sounds so familiar. Well done all for persevering and coming out the other side and good luck (and congratulations) Moos.

My three children have all been tongue tied, and all been snipped at between 2 and 8 weeks. It's all been said so I won't ramble on, except to say tongue tie pretty much ruined my first months as a new mum. But hey, we made it and successfully breastfed til she was one.

One thing wanted to add though - my last baby was snipped by Mr Patel at Kings but the tongue tie grew back within a week. Only after that was I told by Mr Patel that I should have been massaging it (never told that with previous two children though). It was snipped again, and yes I massaged it but it grew back again - was told this was because the tissue was in healing mode having healed once before so little chance of success. Having decided not to do it again under a general, we have continued to feed with some difficulty. So I'd suggest anyone having it done should ask about how to massage it to prevent it healing/reforming over.

I was also told that midwives at Kings are supposed to check all babies for tongue tie now - part of their latest standards of care - though in reality I diagnosed it and had to fight to get it sorted, so not sure that has been taken on board. Also, two paediatricians at Kings agreed my babies were tongue tied but refused to refer to anyone as they didn't believe tongue tie causes feeding problems. Hmm, maybe they should read this thread....

[Moos]

Am amazed by the stories elicited by this thread, and incredibly impressed by the tenacity and love they demonstrate. Hope other people in the position of having tongue tied babies find inspiration here.

For me, so far so good, fingers firmly crossed*. Twosling had his 2nd weigh-in today, and has gained 9oz from his birth weight, so he seems to be thriving. I am now lansinoh-tastic, which is helping, and planning to give shields a try. The windiness and super-long feeds I guess I'll just have to live with until the snip - and to all intents and purposes, that's just life with a newborn.

Thanks all for your kind good wishes.

*not literally, it's hard enough doing everything one-handed as it is...

[buggie]

Glad all going so well with twosling (love his nickname too :)) as a (still) intermittant shield user, can I recommend the Medela ones - really good fit, nice case, and come with instructions of how to put on (sounds daft but v helpful).

[charlottep]

Congratulations Moos!

one thing i'd add is that when my first was diagnosed with tongue tie it didn't initially impact too much on his latch and feeding, and i was given the option to opt out of having it snipped, which i did. As he started demanding more milk and his sucking reflex grew stronger, feeding became a total nightmare and i gave up altogether at around three months - i felt very guilty about it, but i was completely miserable and he was constantly unsettled after feeding. At the time i didn't put this down to the tongue tie. When i had my daughter, who isn't tongue tied, i was literally amazed at how easy breastfeeding was. I'm now 100% convinced it was the tongue tie that ruined the experience with my son and i'm not sure that anyone should be told that the procedure isn't necessary, as sometimes the problems don't materialise immediately. i regret not having his tongue tie fixed, it could have been a very different experience if i had. it also impacts on his speech, i'm pretty sure. We'll probably end up getting it sorted at some point, but as he is totally doctor-phobic i'm not sure when that will happen.

Both my sister's kids were tongue-tied too, both were undiagnosed, and she gave up breastfeeding both very early on too.

[Knomester]

Congratulations Moos and great news on getting the right diagnosis for Twosling! I really hope it goes well for you on Tuesday - just remember that you are doing the right thing.

My story is pretty much identical to anna_r's (I know as we've chatted about it recently!), but sadly after nearly 6 weeks post-tongue tie snip we're still not out of the woods. It is, however, a MILLION times better than it was and I can breasfeed without crying (most of the time)!!!

I have been writing some advice to post on the forum for the past few days (it takes forever trying to write a bit at a time as I'm sure all you mums can imagine...) based on our experience so I'll try to finish it and post it today. I'll link it to this excellent thread.

What I still can't get my head around is the wall of silence when it comes to breastfeeding. Those of us who choose to breastfeed do so because we think it's best and everyone encourages us to do so, but noone (not even, certainly in my case, our mums until they see the pain we're in...) tells it like it is - it isn't always easy and can be horrendously painful and distressing. And if it hurts it doesn't necessarily mean you are doing something wrong...

One thing I would disagree with is the use of Lansinoh cream in all cases. Although it may help with cracked nipples it also creates the perfect environment for thrush (and other infections) to breed and once you have those infections, until they clear up (with treatment) they cracks and sores will not heal.

[Moos]

Thanks Knomester - actually we haven't got a clinic appt yet, but have been referred, so fingers crossed it will be soon -I'm guessing week after next at the earliest now. There's a new system in place whereby Claire Kedves has to see each baby twice (!?) to confirm her diagnosis, so we are seeing her on Wed.

Will try to see my GP tomorrow re: Novogel and infections - your point definitely taken.