Posterior tongue tie - advice needed please!

[Jezabella]

Hello, dd (7 ½ weeks old) is ebf on demand. She is an enthusiastic feeder but has not been gaining weight as fast as she should (according to charts) and has slipped from 25th to 9th percentile and looks to be on her way down to the 2nd. Feeds have always been frequent, taken ages and still can last well over an hour though sometimes less, and altogether breast feeding has not been easy for us ? a blood blister on my right nipple in hospital, then a deep crack on the same nipple which took ages to heal, then ductal thrush, and although that?s been treated, I am still in quite a bit of discomfort/pain when she feeds: pinching sensation, nipple blanching/vasospasm which comes on after feeding, and recently another large blister ? ouch! Anyway, at our 3rd visit to a breastfeeding clinic yesterday (desperate to improve things somehow!), the counsellor suggested checking for tongue tie, and when she ran her little finger along the base of dd?s tongue pronounced that she has a posterior tie (not picked up in hospital). This I guess would also explain why sometimes my nipples have been wedge shaped when she?s come off, and there can be a kind of ridge/stripe across the nipple afterwards too, as if she?s been clamping down on it.

Can anyone advise on snipping posterior ties? I want to be able to breastfeed pain-free, but to be honest the pain is currently manageable and I am much more concerned about dd?s poor weight gain (wouldn?t say no to shorter feed times either!). From what I can find, a tie can also impact on weaning and speech development, but at the same time I am anxious that there may be risks associated with snipping (the bf counsellor said they were harder than anterior ties to snip because it involved cutting more muscle and there was risk of scar tissue forming etc.)?

The thing is, I don?t know if it can be called a severe case (my assumption, the bf counsellor didn?t imply anything one way or the other) as dd seems to have good movement with her tongue, it curves upwards when she cries and she can stick it out a way past her lips, and the tie, even now I know what I am looking for, is hard to spot (to my eyes). Does anyone have any idea if getting it snipped in this situation would be at all likely to improve our breastfeeding experience/weight gain etc. or might it be unnecessary/not worth it? Also, how likely is it that a posterior tie would have an impact on weaning and speech later on?

Any advice or personal experiences would be really welcome! Thanks.

If she can poke her tongue out it doesn't sound that severe.

DD was born with tongue tie and couldn't poke her tongue out at all. It was picked up in the hospital when she was born, but nothing was done about it as they don't snip them here as babies (and at the time I didn't realise that I could travel elsewhere and have it done privately).

It did have a huge effect on feeding, she couldn't latch on at all and went off the bottom of the chart for weight. I expressed and fed her with a bottle, but she even had trouble drinking from a bottle and it used to dribble all down her neck. She couldn't suck with her lips closed.

Eventually when she was about 6 or 7 months old she tore the front part of it herself whilst chewing on a toy. She still has slight tongue tie, but can poke her tongue out a little bit (she is 4). It didn't have any effect on her eating solids or talking.

I think if I had the time again I would have it snipped privately. AFAIK it isn't an enormously painful procedure.

However, a firend whose daughter had mild tongue tie didn't have any problems feeding so it isn't necessarily that which is causing the problems.

OP, I would suggest discussing your concerns with your breastfeeding supporter. Is she in a position to refer you to a clinic that will divide the tongue tie (or refer you to someone who can?

I hesitate to strongly suggest a course of action to you, because really you need RL skilled support from someone who can see you and your baby. That said, the symptoms you describe (pain, nipple damage,slow weight gain) taken together suggest that a tongue tie is affecting feeding.

Thanks for replying, it certainly sounds as if dd's case is very mild compared to your daughter's although have noticed she is also a very messy bottle feeder on the few times we have fed with a bottle (though this may just be lack of practice?). Am also interested to hear that for your friend, her daughter's mild case didn't pose feeding problems at all. Ho hum, maybe our problem is as much a shocking latch as anything else, though dd doesn't seem keen/able to open her mouth wide for the whole feed, only at the beginning, which doesn't help matters (another tt 'symptom' apparently). Will look into getting it snipped I think.

Thanks for your advice and sharing your experience of it, most helpful.

and thanks for your post also, Lizzytee. I am definitely going to investigate further with a view to taking action I think.

Ouchy ouch, sounds like you've been through hell. If you are anywhere near southampton I would recommend pushing to get referred to the tongue tie expert there....I just tried to google him (he's Mr Mervyn Griffiths) and found this excellent list of places that do the snip www.babyfriendly.org.uk/items/resource_detail.asp?item=440

Although she can poke it out, the wave motion that the tongue makes is so important to effective breastfeeding, and a posterior tie can really hamper that.

good luck.

DS had a posterior tongue tie that was snipped at 11 weeks and here are some of the things I learnt:

The earlier a TT is snipped, the easier it is for the baby.

Just because it is a posterior TT it does not mean it causes less pain than a more noticable TT - it is all to do with the baby's ability to move the tongue correctly, not just stick it out. A baby with a type 4 (posterior) tongue tie can feed badly and cause horrible nipple trauma. Likewise, a baby with a type 1 tie can sometimes feed perfectly. Type 4 ties are always hard to see, but when the surgeon who snipped DS's showed me in detail I was surprised at how little length he really had to play with. It all looked quite normal to me.

DS could poke his tongue out, making me think he might be okay. It was a shock to see how much further he could stick it out afterwards. It was his favourite thing to do for quite a while.

The pain often gets less as the baby's mouth gets bigger, and as the baby learns to compensate, so a certain amount of improvement is not uncommon. Because the baby is not latching correctly, there is a chance that your milk supply could be affected though. I was told that initially, a mother's supply is hormone driven. After about 6 weeks, 'supply and demand' starts kicking in. This probably differs from baby to baby.

DS didn't have a weight gain problem, but many TT babies do as they are very inefficient feeders. Feeds also can take ages.

DS had his TT snipped by Mr Salesh Patel, a consultant paediatric surgeon at King's College. He runs a weekly clinic (very busy), but normally sees you within 2 weeks of referral. He only divides tongue tie for breastfeeding purposes (he says he considers it a feeding emergency), and not for speech purposes as there is no way of knowing whether speech would be affected.

As DS was 11 weeks (the oldest at the clinic), Mr Patel said he would have lots of bad habits and that it would take time for him to learn how to feed properly. There was a slight improvement immediately, and it did keep improving. I don't think DS will ever have a perfect latch, but it is painfree now so I'm glad we did it.

There were no complications with the procedure, but I won't lie - I found it really difficult to put DS through it. You have to feed the baby immidiatly afterwards, to soothe the baby and aid healing, and then feed every 3 hours (I think) for the next couple of days. DS settled after he was fed, was a bit cranky next morning but was fine after Calpol. I was a wreck...

I hope I haven't forgotten anything, but if I have, just ask.

BTW - you've done brilliantly feeding your DD - I remember how hard it can be

Thank you so much for your replies, Process Yellow and Browneyes, sorry I've not been at my computer Friday and today and have only just seen your posts.

We're in north London so from the list it looks as though Mr Patel at Kings might be our best bet. Have a feeling they might also do it at the Royal Free in Hampstead. We are having our 8 week check-up at the doctor's next week so I will mention all this to her then and press for a referral.

Very interesting hearing about your ds, Browneyes, and that you also thought at first it wasn't a severe case but having the tie snipped dramatically improved how much he could move his tongue. I can't bear the idea of putting dd through an unpleasant experience, but if it would mean that she was able to gain weight better and become a more efficient feeder then I think I may take the (difficult) decision to go for it, presuming the doctor agrees to refer us.

Many thanks.

Jezabella this post is of great interest to me as my week old son also has mild posterior tongue tie which was picked up at a bf clinic yesterday. They gave me some bf tips to try over the weekend and if things don't improve I might go to JOhn Radcliff Hospital in Oxford to get it snipped. They said as it was mild we might be able to feed anyway, but I have cracked, bleeding nipples which blanche and mastitus all within a few days of birth. My nipples are always squashed after a feed. Trying "nipple tilt" to get my nipple right to back of his throat. He is also jaundice so a bit sleepy and lazy over the whole affair. I'm not enjoying BF at all at the mo, but would hate to put my son through something when it could just be my bad technique. I BF my DD1 for 6months, but with a lot of nipple trauma, blocked ducts, mastitus etc and so it could well be my "fault" not the tongue tie. With two DC I know I need to get BF sorted soon in order to function. Good luck with your decission. x

From memory, I think Royal Free have a bf clinic from where you can get referred for snipping if needed. The bf clinic you just turn up for. Perhaps you could find details of this and pay them a visit to talk about the option of getting it snipped? Any referral is always for assessment, so even if you go along you can decide not to have the snip done after talking to the surgeon.

You can get a referral from any bf clinic to Royal Free's tongue tie clinic, which is expertly run. I thought you might find it useful to know what happens there.

You'll get an appointment and there will be a number of parents and babies there. A lady called Jean Waldman runs the clinic and she runs the sessions by talking through tongue ties and if you go for the snip, what will happen. You then need to decide whether or not to go ahead and tongues will be snipped there and then. It's a nice way to do it as you get to chat to the other parents.

DD had her tongue tie sorted there at 3 weeks old. If you do decide to do it, sooner is better, as I don't think they can feel pain there so early on. You accompany your baby into another room and leave her with them for a couple of minutes (while you wait in a waiting room) and they bring back your baby once they are done.

DD didn't cry at all - until she saw me and it was nothing compared to her pained wails when she had her first jabs at 8 weeks!

Jezabella - did you get a referral at your 8 week check up? If not, maybe consider paying to get a lactation consultant to come round.

I empathise completely. DS couldn't latch on in hospital and I was manually expressing colostrum and sucking it up with a syringe. At home I expressed and bottle fed and went to breast feeding goups, got counsellors round. They all just chimed the same mantra of nose to nipple without addressing the reason for the boy not latching on. Plus I had condemnation for using a bottle even though it was of breast milk... (has anyone successfully cup fed a thrashing hungry baby who hated being swaddled?).

In desperation, in his second week, I called the La Leche League and the counsellor there thought something was up and suggested a lactation consultant. It was the best thing I could have done. Not only did DS have a posterior tongue tie and a small mouth gape, he also has a high palate.

The lactation consultant, Ann Dobson, was brilliant (like a baby whisperer) - I'd happily recommend her. She snipped the tie there and then (I left the room). I initially had to feed with nipple shields to deliver the milk to his high palate and to get his tongue up to speed. I'm in the process of weaning off them now as his voracious suck can draw the nipple all the way through the four holes at the end! (If anyone can give some good tips for weaning off nipple shields I'd be most grateful.)

Anyway, good luck and let me know how you're getting on.