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Infant feeding

Get advice and support with infant feeding from other users here.

Tongue Ties - where to go for division?

23 replies

Midice · 02/02/2014 22:31

Have you had a baby with a tongue tie and been able to access support with division? I would like to get an idea of what resources there are both NHS and privately in order to signpost mums to their most appropriate local support. I get lots of requests for information, as the Chair of the Association of Tongue Tie Practitioners, and would appreciate any details of who you have found to help you, to pass on.
ATP

OP posts:
SpanielFace · 02/02/2014 22:38

I'm in Lincoln, and was referred for division by an NHS breastfeeding consultant. I can't remember the surgeons name, sorry, I was in a sleep deprived haze at the time! But it was done at our local hospital, Lincoln County.

MrChow · 02/02/2014 22:39

We have a midwife at our hospital trained to do them, she has a regular clinic (weekly) but will also carry them out on the ward.

IndigoTea · 02/02/2014 22:41

I had my LOs tongue and lip tie lasered by a Dr in Huddersfield (I've forgotten his name). I know there's another Dr, I think Malcolm Levenkind who lasers ties in North London.

There appear to be plenty of people who divide ties the traditional way.

Sangelina · 03/02/2014 04:44

We had it done on the post natal ward by a midwife.

WhatWillSantaBring · 03/02/2014 06:13

Another one with a community midwife trained to do them. Wish more were though, as it took three bastard weeks of tears and pain

drawohamme · 03/02/2014 06:17

I'm in London. UCH took ages to give us a recommendation so I spoke to my NCT breastfeeding councillor. She put us in touch with a private midwife who came the day after we left hospital.

SpanielFace · 03/02/2014 06:39

If there's one thing I wish, it is that hospital staff had more training in the problems that tongue tie can cause. DS had his tt picked up at birth, but I was told by the paediatrician that, as I was having no pain feeding him, it wouldn't cause a problem. Naively, I believed them. It took until he was 8 weeks old (and had dropped from the 50th to the 0.4th centile) for us to get it divided - I had to self refer to a breast feeding counsellor, who in return referred us to a doctor, but he had a 3 week waiting list.

Having it divided improved his latch, but it was never great, I think because he had had 2 months to learn the "wrong" way. My milk supply was always poor as well, and he was an unhappy, skinny baby, difficult to settle, cried all the time. I thought it was just his age (& maybe his personality).

I fed exclusively until 5 months, when he finally fell off the bottom of the centile chart, my MW starting talking about referral for failure to thrive, & I made the decision to supplement with formula. In the first 2 months of formula he went from below the bottom of the centile chart to the 75th centile, where he has remained (he is now 18 months), and changed from an unhappy, colicky baby to a happy, contented one. But my happiness over this was mixed with guilt that I'd "failed" at breastfeeding.

I'm pregnant again, and dreading a repeat of the experience - I spent most of his first few months in tears because of his failure to gain weight, people's comments about how tiny he was, the feeds that took over an hour and he was clearly still hungry at the end, the guilt... All because of the paediatricians inability to recognise that pain is not the only problem caused by a tongue tie. I don't know how much influence you have as an organisation, but surely everyone working in a maternity ward should have the basic training to recognise this?

Sorry for the long rant!

LlamaAndOwl · 03/02/2014 09:58

Surrey operates a number of tongue tie clinics on the NHS. I was referred by the breast feeding clinic at the local children's centre. There is also a surgeon at Kingston Hospital that does it privately (£80 I think).

MrsCakesPremonition · 03/02/2014 11:13

Does anyone know where their midwives get accredited training to dealing with tongue tie?
I'm hearing reports that there isn't any accredited training available in the UK that is available/acceptable to NHS.

minipie · 03/02/2014 11:29

DD's was diagnosed by a private breastfeeding counsellor, Geraldine Miskin based in Surrey/SW London. She doesn't cut them though.

It was cut privately by Dr Graham I Smith at Kingston hospital (80, no referral needed), a surgeon. He also does NHS work I believe though not sure where he is based.

NHS - I know there is a clinic at St George's Hospital in Tooting, also at Kings Hospital in SE London. I believe the Kings clinic needs a referral from a breastfeeding counsellor however.

I would beware people who think they can diagnose (or rule out) TT, but actually have no idea what they are talking about. For example one of the nurses in SCBU where DD spent 3 weeks told me she couldn't be tongue tied because she could stick her tongue out miles Hmm. Naively I believed her Sad.

A directory of people who can diagnose and/or cut would be incredibly helpful.

ZowieBowie · 03/02/2014 11:30

Kings College in London with midwife referral. It took 3 terrible, horrible weeks for someone to suggest TT might be an issue (seemed like much longer at the time!) with HV's telling me my latch was wrong, why don't I try rugby hold etc while DD screamed 24/7 and I slowly lost my mind!

Helspopje · 03/02/2014 11:39

Kings tt clinic works, but it is a trialing experience. they do the babies in age order so my wasted hungry since birth 8 week old had to wait 5 hours without a feed whilst the younger ones were done first.

Took 10d from initial review at a BF cafe - first 5 days was following the LCs advice re positioning ect and then formal referal to division was a further 5.

There is already a list of who does it where
www.unicef.org.uk/BabyFriendly/Parents/Problems/Tongue-Tie/Locations-where-tongue-tie-can-be-divided/

Helspopje · 03/02/2014 11:40

clicky link

WhatWillSantaBring · 03/02/2014 11:50

The MW who divided mine (well, DC's!) is actually trained to train other midwives, and had a lady there who was in the process of getting authorised. Her name is Hilary and she's based in Frome - I think she said she was the only MW who was able to train others.

Interestingly, the dx process for dc2 was very different - MW were really hands on, checking the suck reflex and having a good feel. DC1 was divided by a consultant in the ENT department, and it was all done on the basis of me telling them about bf issues.

I wish there was better knowledge about this. I know they won't divide unless you're having bf problems, but by the time you're having problems, it can be too late!

monniemae · 03/02/2014 12:49

I had a tt division at Kings. Referral was via breastfeeding cafes/lactation consultant and kings' breastfeeding coordinator at 3weeks. It was v quick - a week or so (ages at the time of course). My Lewisham HV had initially acknowledged TT but said "it isn't a problem as the baby is ok" Confused I was in agony, she was feeding 12+ hours a day and she did start falling down the charts.

There are lots of breastfeeding cages in SE london but they are very patchy in terms of diagnosing TT. I have several friends whose babies TTs were repeatedly missed.

monniemae · 03/02/2014 12:50

*breastfeeding CAFES

McBaby · 03/02/2014 14:27

It took 7 weeks for my daughter to be diagnosed with tongue tie despite me visiting every specialist I could as I was in so much pain but she gained weight very well so I kept being told the pain would go as I had a great latch.

Finally a midwife suggested it could be TT but I could not wait the 3 weeks for the NHS referral to the Royal Free so went privately with Helen Caulfield the ENT surgeon at the royal free and had or cut the following week.

It took four cuts and until my DD was 6 months for our issues to be resolved due to one cut not being deep enough to severe the posterior tie and 2 reattachment.

lookout · 03/02/2014 14:49

Berkshire and South Bucks offer it on the NHS through referral at Wexham Park Hospital. I had to wait 5 weeks for it though, and then it was done incorrectly. Went to a private lactation consultant in Eton after that, at 7 weeks and got it done properly.

BuffyFairy · 03/02/2014 15:10

DD's lip tie and posterior tongue tie was revised by laser by Dr Malcolm Levinkind. This was after we'd been to the NHS clinic at St George's where the registrar told me DD couldn't have tongue tie as she could stick get tongue out. She did acknowledge DD had lip tie but had to check with the consultant as she had no knowledge of treating them. I wasn't impressed and there was no way I was going to let them revise the lip tie after that.

minipie · 03/02/2014 15:18

the NHS clinic at St George's where the registrar told me DD couldn't have tongue tie as she could stick get tongue out

Shock Shock can't believe you were told this at an actual TT clinic! Thank goodness you knew better.

That's the second time I've heard something bad about the St George's TT clinic in fact. A friend went there and waited for ages with her baby (who'd dropped down numerous centiles) only to be told the registrar had "forgotten his instruments" so she needed to come back the following week. Unimpressive.

BuffyFairy · 03/02/2014 17:05

Minipie I couldn't believe it either. The woman I saw seemed very inexperienced. She didn't even look under her tongue!

It's only thanks to poster's links on mumsnet that I found out about ties and was able to do my own research.

NickyEds · 03/02/2014 17:40

My DS had his Tt snipped at 17 days at NHS Bradford Royal Infirmary ENT by a registrar there. His Tt was identified by the midwife who delivered him and confirmed by every other MW who saw him but they all said that my latch was fine so it didn't need snipping- I was in agony but it wasn't until he was still losing weight at 12 days that he was referred by an NHS breast feeding consultant. My supply wasn't great and I'd had to give him formula by then so I'm now mix feeding. I really think that the "wait and see"approach cost me exclusive BF and just wish that someone on the ward was trained to divide Tt at birth. If I had my time over I would have just paid to have it done privately but I really knew nothing about it and the effect it could have on feeding.

nomoreminibreaks · 03/02/2014 20:59

I've been through the NHS route and they insist DS does not have a posterior tongue tie when an independent lactation consultant says there is one. I'm getting in touch with Ann Dobson in London (she travels around the country) who comes very highly recommended. Apparently a home visit (I'm in Yorkshire) will be £200.

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