Tongue tie snipping - successes and "failures"?

[Emzar]

Hi, sorry, bit of a long-winded background coming up:

My son is 7 weeks old, and breastfeeding has been painful from the start. We've made some progress, but we're still struggling with pain, blisters and cracks. I'd read about tongue tie online, and the symptoms were so similar to what I was getting that I asked professionals at 2 different clinics to check for it, and was told it wasn't that. In desperation yesterday, I paid for a private home consultation from a lactation consultant, who took one look at my son's mouth and diagnosed moderate tongue tie and recommended getting it snipped.

I'm relieved that someone has at last listened properly to my symptoms, but I'm worried about what to do next and would appreciate advice. My worry is that the consultant told us the "success rate" for tongue tie snips (ie. the number of women for whom feeding improves afterwards) was officially 80%, but in her experience was nearer 60% to 70%. This seems a very low rate to me, to justify something which is a surgical procedure on a baby. I also have a friend whose baby has just had a tongue tie treated and it has made no difference to her feeding problems.

My other worry is that my partner is very sceptical about the diagnosis. He feels that as two other professionals ruled out tongue tie, that the consultant is being over-enthusiastic in her diagnosis. He's worried that if we have it treated, it won't help and we'll have put our son through it for nothing.

I would like to get the tie treated to give us the best chance of breastfeeding for a long time, but I need some reassurance about making the choice. So, I'd be grateful to hear about other people's experiences of getting tongue tie treated - if it helped, what were the effects and how quick was the improvement? If it didn't help, were you given an explanation as to why not?

Thank you.

The lactation consultant is very likely to be right.. Lactation consultants will have seen hundreds and hundreds of babies' mouths and are specifically trained to look for tongue tie I believe. On the other hand most HCPs, including midwives, are not trained to spot tongue tie properly and breastfeeding counsellors may also miss them - they all missed my son's posterior tie and I have friends who have had severely tongue tied babies and whose health care professionals have all missed them.

You say you're worried about it being a surgical procedure. I do understand this as I felt the same before we had my son's done, but honestly, it's not a surgical procedure as you think of it. You go in, the baby is laid down on your lap feet toward your body, local anaesthetic is applied on the bit to be snipped (this must be standard I would think) so they don't feel anything and it takes a second with a pair of blunt-ended surgical scissors. The consultant who did DS's said they usually bleed a little bit but stop very quickly and this was absolutely right in DS's case. He was happily sucking his dummy five minutes later, and carried on doing so (and feeding fine too) long after the anaesthetic had worn off. There is a teeny tiny risk of something going wrong but they are trained to sort it out if it does.

Tongue ties can (don't always) cause speech problems in later life, and also problems with things like moving food around the mouth and weaning. If a child has it done later then he or she would have i t done under general anaesthetic, which carries a higher risk.

Sorry, as to whether it helped, we had actually already stopped BF for other reasons to do with my health at that point - we had it done as he was having probs swallowing loads of air on the bottle and we were worried about speech issues in later life as my DP had them as a small child and it affected him a lot.

Had it done - didn't help I'm afraid. But took about 20s and dd was fine.

DD3's was snipped at 10 days old and it made a huge difference. I went onto bf for a year.

My experience was completely different, I had my son's tongue tie "snipped" at 7 days. Local anaesthetic was not used, I was not allowed in the room whilst it was done I had to stand outside (standard practice, I was not being hysterical!). My husband had to wait in a waiting room even further away. My son was handed back to me with blood smeared up his cheek and a bloody dressing in his mouth. We had already been waiting five hours for the procedure to be done without being allowed to feed, I was then told he he had to breastfeed before we left - due to latching problems he had never breastfed before, I had been cup feeding with expressed breast milk. He still couldn't latch and his toungue was permanently folded in half to the point that later when I bottle fed him I had to hold his tongue flat with my finger until he latched onto the bottle. I was advised by the breastfeeding counsellor that the tongue tie needed to be snipped again. My son already had an open wound the size of a 20p under his tongue so I refused.

We ended up seeing a cranial osteopath for six months to sort the muscular problems.

I put my son through this because I was desperate to breastfeed him and it didn't work. I am pregnant again and if my next has tongue tie then I won't be getting it cut.

I know the straightforward, had it done, baby slept through it then successful breastfeeding cases are the vast majority but it's not always like that. I wish I had heard about both types of experience before I made my choice.

Good luck, I hope all goes well with your DS and your feeding becomes a happier experience.

CornishKK I am really shocked that your DS had a wound the size of a 20p under his tongue. Who did it??? This just cannot be right - no respectable surgeon would send a 7-day old baby away with such a wound, it would surely be an infection risk. Did you complain or get any aftercare?

Why on earth did they make you wait 5 hours ?

DS had his snipped at 11 weeks - it took that long to get a diagnosis and referral. It was hard for me to decide to do, and I did have a bit of a wobble before signing the form, but it wasn't really like a surgical procedure.

It took less than a minute, and he was brought to me with a bit of bloody gauze under his tongue. He was not happy at first, but soon settled down when he started feeding. The consultant did warn me that DS might be a bot more distressed than normal as he was a little older than the babies he normally treated. He also said that part of the distress was caused by him being restrained, and compared the actual snip to getting an ear piercing (ie, over very quickly).

We also had to wait a few hours before DS was treated, but I was happy to do so. The hungrier the baby, the more likely they are to latch quickly afterwards, and the act of feeding helps the healing process. As DS was older than the other babies waiting, I thought the longer he could wait, the better.

Cornish - I'm really sorry to hear your story. It is true, not every case works and there are some cases where a tie needs snipping again. It must have been really upsetting :(

DS's wound looked really raw, and was probably similar in size, but as he was a bit bigger than Cornish's son I imagine it didn't look quite as dramatic. It healed quickly, but I was told I had to feed him every 2 hours for the following few days to help it heal properly.

I am still bf now, and DS is 14 months, so for me it was the right choice.

It was done at Kings College hospital, they run a clinic where they get all the parents/babies in at the same time, herd you into one room with no windows, tell you all the stuff about tongue tie that you have already read on the internet. There were about 15-20 babies that day and PFB was about third to last to be seen. I may have been being a bit baby blues but I was in bits by the end of the day.

It did get slightly infected but I took him to my GP rather than following up with Kings.

TBH, I didn't complain although I intended to I was so busy dealing with a non-feeding & colicky tiny baby that I didn't get round to it.

In fairness other couples were coming out with babies that did not seem that disturbed and the breast feeding support at the hospital is fantastic.

I got myself into such a guilt ridden state about not being able to breast feed I pretty much stayed a recluse for the first few weeks, horrible experience.

Cornish that sounds terrible! Was it quite a complex/severe tongue-tie?

We had ds's done at 3 weeks. DP and I both went in with him, he lay on DP's lap and the doctor took a small pair of scissors and snipped the tie. No anaesthetic, no more that a drop of blood, no dressing in our case - ds grumbled a bit but didn't seem bothered. You couldn't really see a wound the next day.

Oh Cornish :( I was seen at King's too. With such a little baby, it would have made much more sense for you to have been seen earlier! Thinking about my experience, I would have found it helpful to have talked to one of their bf counsellors before the procedure - in your case, they should probably have been made aware beforehand that your DS had never bf before so that they could have at least talked it all through with you.

If it's any consolation at all, I was just relieved that it was over when I left - I still had a bit of a blub when I got home, even though it was successful. It was stressful.

I hope the cranial osteopath was able to help your DS

BTW - DS had a posterior/hidden tongue tie, which I think may be why his wound was a larger than I thought it would be.

I'd say it's worth getting it done. I was one of the unfortunate people for whom it didn't make any difference, however it's a really minor procedure. If I were you I'd rather take the chance and hope it makes a difference. Painful feeding is very physically and emotionally draining. Hope you are able to make a decision that is right for you and that things will improve for you.

my experience was similar to Rita.

DS was 8 days old, hospital had spotted tongue tie but said it wouldn't need snipped, i didn't know to question it. midwife who visited and saw us struggling at home on day 5 was livid and phoned for an appointment right away.
he lay on his dad's knee and the snipping was very quick with not much blood.

he fed fine straight away. I'd already got a crack on one side so it made a big difference that he wasn't slipping off and hurting me.

good luck!

I had 3 dc with posterior tt snipped. The first at 6 weeks made an immediate difference and je wasn't upset by it. The dts were done a bit later. Dt1 finally latched properly and stopped chomping me. Dt2 had never been painful to feed but was very coicky and the snip did help him comfort feed because he had had s very forward gag reflex which it solved.

I have a posterior tt and didn't realise till recently that it doesn't normally hurt to stick out your tongue.

Cornish that sounds awful. Ds1 was done in a similar clinic at the royal free but the never saw more than 4 babies so we each had detailed and personal support. I would complain even after all this time. No small baby should go 5 hours without food :(

Another positive one for me - we had an individual appointment so were seen immediately. My daughter was put in a hospital bassinet and held still by a nurse while the midwife (an infant feeding specialist) snipped her posterior tie. I was allowed to watch. They handed her straight back, it only bled for a few seconds and she cried for a few minutes before feeding. There was an instant difference, even though she was 10 weeks so still took a while to unlearn her bad habits afterwards. Her ulcer was also that big - the mucosa opens out into a big diamond so this is perfectly normal.

Research shows that 3.5% of anterior ties need revising, and 22% of posterior ones, so it might need a second snip if it doesn't improve. Even if it doesn't work, it's incredibly unlikely to cause complications, and compared to the nutritional benefits of breastmilk and emotional/physical benefits of the skin-to-skin contact when feeding, it is no contest.

My DD's was snipped at about 7 and a half weeks. I had an EMCS and was in hospital for 4 days, in which time no-one could get her to latch (she just wouldn't, and pushy midwives and formula - prescribed by the paed, i had no choice - didn't help either, IMO) and I left hospital with a cup, syringes and giving her EBM and formula at every feed. The midwives noted a TT while we her in hospital (I say noted - various midwives looked her in her mouth and said she had one but disagreed with each other as to whether it was a problem or not, and nothing was done, although it was written on my discharge notes). She fed for the first time at about a week old, then latched intermittently before starting to do it all the time at around 3 weeks. We were attending a weekly BF clinic and they noticed it too, but we weren't referred until 5 weeks (so a fortnight wait) because DD lost weight (I had thought BFing had finally started going well, but alas) and they thought she was getting tired out and not feeding efficiently.

We got it done, and I did notice that her latching and sucking seemed better and she seemed to feed longer, but by this time she was 8 weeks and I had lost the plot with BFing/topping up/expressing (weren't allowed to drop top ups, and I was scared that she would lose weight again if she did) so stopped the big regime and just BF'd twice a day followed by a top up and just bottles the rest of the time. I did notice that she could go a while after her BF before she cried for milk again, so I guess she had upped her technique.

So.... to answer your question. The TT snip itself was very quick and over in seconds (they wrapped her up in a towel, asked me to turn around and did it there and then) before we were taken into the neighbouring room to BF (apparently it helps to placate them as well as help it heal). DD was absolutely fine (no crying, fast asleep again) about 10 mins later, although she did have some bleeding later in the day but this stopped again very quickly.

Because I didn't continue with the BF/top up/express regime that much longer after the snip I don't know if we would have managed to get to exclusive BFIng, but it did help me to mix feed until about 7 months.

The BFing counsellor we saw said that there was no down-side to getting it done (and as another poster said, it can sometimes cause speech problems later in life) so if we were in the same situation with another baby again we'd get it done. Except I'll be insisting on it when we're still in hospital!

Oops, sorry for such long post.

Good luck

I'm sorry that so many of you had such negative experiences.

I tried to breastfeed with DS but we were readmitted to hospital when he was 5 days old due to massive weight loss. They topped him up with a bottle overnight but I was still having problems with him not latching on properly. A friend whose daughter had tongue-tie successfully treated told me to go online and look for pictures then compare it to DS's tongue - we basically diagnosed it ourselves. Mentioned it to midwife when she visited on his 8th day, she booked an appointment with an NHS lactation consultant on the 10th day who snipped him and gave him back to me, and he latched on well. Because his TT was 90%, we had a review booked for the following week when he had it snipped for a second time. Have been b'feeding successfully ever since for 4 months now.

Thanks for all the responses, it's great to hear other people's experiences.

Has anyone else had a tongue tie cut in a slightly older baby? My son is 7 weeks now, and if we wait for a referral to a consultant for the division, it's likely to be another couple of weeks. Has anyone had it done this late with successful results?

Here's a link to the NICE guidance and evidence on tongue tie division, if anyone else is interested:

www.nice.org.uk/nicemedia/live/11180/31409/31409.pdf

DS was nearly 12 weeks, and it was successful. The consultant explained that he would have learnt a lot of bad habits and so it would take a lot of 'retraining'. As it turned out, that wasn't as hard to accomplish as I thought it would be.

There was only a small improvement initially, but it kept improving over time. After a few weeks, it was only slightly uncomfortable, and I remember thinking that if it didn't improve any further it wouldn't matter and that I would easily be able to continue bf, as it was such a relief not to be in horrible pain anymore.

After a few more weeks, I thought that it would never quite be perfect, but that it didn't need to be as there was no pain at all.

By 6 months, I realised his latch was fine and I hadn't even noticed when it happened.

DD was 10 weeks when diagnosed with a 50% tongue tie by our local hospital's breastfeeding support drop-in and we had her tongue tie cut/cauterised at 12 weeks privately through BUPA at Oxford Childrens Hospital.

She was given local anaesthetic gel and they used an electric wire rather than scissors, which immediately seals the wound. She was taken away from us to do this, when she came back I fed her and over the next month the latch improved. There was no visible blood and the wound looked red with a white 'scab'. My cracked nipple healed and she is now 8 months old and is bf (she has had a small amount of formula but won't usually take a bottle).

I was offered blunt-ended scissors in the church hall I am glad we were able to go to the hospital. The consultant who did it said it was quite thick and scissors are not always sucessful, he is getting referals for ones done with scissors unsuccessfully.

DS was 12 1/2 weeks when he had his snipped. He was quite upset and wouldn't feed straight after, so I was sent home with a direct number to the clinic in case of problems.
Straight away, feeding was better. He didn't slip off, didn't take in air, it didn't hurt, he's now not as sicky as he was either.

He is still Tongue tied (was right at the end of his Tongue, so I suppose the dr was limited as to how far back she cut) but feeding isn't a problem at all now.
I think it's definitely worth doing.