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Tongue-tie awareness and early treatment campaign

(67 Posts)
MoJangled Sat 15-Sep-12 20:55:45

I'd like to suggest a campaign to help midwives, doctors, health visitors and lactation consultants to identify tongue-tie (much much) more reliably, and to get all maternity and HV services providing facilities to treat it early. It's chronically misdiagnosed and then frequently not treated, or treatment is very delayed, leading to all sorts of problems with BF, infant health, mother-baby bonding and PND. Discussion of the Day thread here has some really dreadful experiences. Given the amount that goes into promoting BF, it seems mad not to get a better grip on such common and soul-destroying issue. WHo agrees?

Samvet Sat 15-Sep-12 20:58:27

Count me in. Lack of diagnosis of this condition ruined by early experiences with my son and killed breast feeding.

MumOfTheMoos Sat 15-Sep-12 21:13:44

Count me in too - misdiagnosis cost me 4 weeks of breastfeeding and a lot of heartache.

Well started mojangles, I saw a paed nurse after dd's tt had been divided privately and he said he'd never known it make a difference to breast fed babies!
We definitely need this sorting, what I can't understand is why its just not on the mw's checklist on day 1 in mat notes.

Yes, count me in as well.

Shocking that there is this level of ignorance about TT, and also refusal (yes, refusal) to diagnose and treat something so simple angry

MoJangled Sat 15-Sep-12 21:37:33

Argh to your paed waitandseepudding ! The more I find out about it the more bonkers it seems not to check and treat in the delivery room. Not that I'd have been a fan of anyone cutting anything of DSs when he was brand new, but that would have been infinitely preferable to the mess we got into afterwards.

lambinapram Sat 15-Sep-12 21:42:25

I agree. Worse night of my life was when my new born daughter screamed for 8 hours because she could not BF. It was Easter sunday so we couldn't buy formula. The hospitals advice - she will feed if she's hungry enough!

colafrosties Sat 15-Sep-12 21:43:46

I was very lucky in that the midwife who visited my home diagnosed it on day 5 but during my 4 days in hospital while struggling with breastfeeding and nearly giving up, no-one realised, including the paediatrician who I asked directly. The skin flap went from DS's bottom gum to the tip of his tongue so it was very obvious. (I wouldn't have really known what it was other than at the NCT antenatal meetup I went to, one women was speaking about the terrible trouble she'd had to get it diagnosed over several months.)

Longdistance Sat 15-Sep-12 21:48:23

Count me in.

I believe this should be included in the birth checks in hospital. Would make a lot of mummies lives easier. And have the procedure done before leaving hossy.

Ty can affect their speech too, and it's not just a feeding issue.

perfectstorm Sat 15-Sep-12 21:52:09

The failure to treat my son's tt effectively at an early enough stage led directly to severe PND, and failure to bond for the first year of his life. I would support this campaign so very wholeheartedly. It's hard to convey how awful it can be, to be told your baby knows how to feed, it's you that can't get the hang, and to keep going... only to find out, months later, that he would never have been able to. The sense of failure I felt coloured everything, and the physical pain over those months of trying to latch a baby who was trying to chew the milk out from the nipple - literally - made it very hard to love him. I don't, as a rule, think about that terrible time any more. But it would be lovely to know others would have the support and help in place that would have been so desperately welcome for my lovely boy and I.

Totobear Sat 15-Sep-12 21:57:51

I spent the first few weeks of my sons life crying in pain at every feed, with many HVs, midwives etc telling me his latch was perfect. Money, heartache and tears later, we had to give up and just express.

Wish I had known problem from start and had it explained so I wouldn't have beaten myself up so much for seeming unable to feed my child.

perfectstorm Sat 15-Sep-12 22:03:02

I should also add that, like a worrying number of mothers here, DS lost 20% of his body weight within the first week, and was dehydrated to the point his mouth felt dry when I inserted a finger. It was only then that he was supplemented with formula while I began to pump up the supply. The advice was to "offer the breast regularly and not worry" before that point. Yet my son was unable to latch properly from a bottle, the tie was so severe. And had a division not occurred he would probably have had speech problems, would definitely have had eating problems, would never have been able to lick an icecream... and would never have been able to kiss using his tongue. Those are not minor worries.

Not all tt babies will need division, but all tt babies should be observed to ensure there are no feeding problems. In my case they knew he could not latch, they gave me syringes when discharging in order to assist his feeding, and then said he'd "get the hang of it" if I kept offering the breast. This was (potentially catastrophically) poor advice.

perfectstorm Sat 15-Sep-12 22:04:28

Could I also ask that Mervyn Griffiths be invited to do a webchat with Mumsnet? That could be archived for other mothers in future, which would be such a valuable resource, IMO.

NoWayNoHow Sat 15-Sep-12 22:04:44

I feel very very strongly about this - tongue tie for DS wasn't diagnosed until he was over a year old, meaning that his treatment involved general anaesthetic. No parent should have to immobilise their screaming, panicked and scared child for a 5 minute procedure that could and should have been done a couple of days after birth with no fuss at all.

lookout Sat 15-Sep-12 22:07:53

I'm in too. Although ds2's tt was diagnosed early i had to wait 5 weeks to get it cut on the NHS and even then it wasn't done properly and I had to see a private lactation consultant to get the rest cut away. In all over 8 weeks of severe pain, bleeding nipples, expressing, Jelonet, tears and heartache which could have been avoided had the revision been done sooner. Ooh, and my hv also told me my latch was perfect both before and after the tt was diagnosed!

Rachog Sat 15-Sep-12 22:12:34

It seems so common and is so easy to treat surely it should be part of the new born check. Fortunately ds's was spotted by chance hours after birth. A mw slammed a drawer, ds. Jumped and started to cry. Mw looked over from across the room and said oh look he's tounge tied.

If it is that easy to spot why aren't they checking for it!

I was fortunate that it was my second baby who was tongue-tied, not my first. After DD was born I trained as a BF peer supporter and it was because of the training that I realised DS had a poor latch and looked for a tongue-tie.

The MW told me that it was barely noticeable, wouldn't affect feeding and refused to refer us. DH and I paid for a lactation consultant to come out and check DS - she diagnosed a 75-80% tie. She cut it there and then, and over the next few feeds his latch improved noticeably.

If he had been my first I would never have been able to breastfeed him. There is a misconception that tongue-ties are a minor problem when in fact they can cause a lot of issues throughout childhood and into adulthood.

mawbroon Sat 15-Sep-12 22:17:57

It's definitely not just about breastfeeding.

DS1 went undiagnosed tongue and lip tie until he was 6. He was suffering terrible reflux and bloating.

He has a high palate because of the tongue tie (the tongue shapes the palate) which encroaches on the space for his eustacian tubes and nasal passages. He has had ear trouble and can't breathe through his nose very well and also has had periods of sleep apnoea which is also linked to the high palate.

The high palate means there is not enough room for his teeth in his top jaw and coupled with mouth breathing and tongue thrusting, his lower jaw has become bigger than the upper jaw. He is getting braces and headgear soon to start the first phase of orthodontics.

There is way more to it than just feeding! It also seems that the experts are looking at links with allergies and intolerances too. As well as speech problems of course, and trouble with solids.

thatsthebadger Sat 15-Sep-12 22:43:46

Count me in too. Both dc were TT. Diagnosis and treatment were hopeless and late in both cases (we moved in between).

How does it work with getting a campaign off the ground? Does MNHQ need to bless it or something?

madscimum Sun 16-Sep-12 09:06:07

Yes! There needs to be much better awareness around tongue-tie. One problem I think is that some HCPs think they know about it, but only know some superficial things, and this can almost be more damaging than complete ignorance.

My DD was eventually diagnosed with a very tight submucosal posterior tongue-tie, which when clipped at 7 weeks led to an immediate change in feeding. She shot up from under the 25th centile and has finally settled to just over the 75th, back where her birthweight was. She was "checked" for TT several times, but this only consisted of peering into her mouth -- inadequate for posterior tie. If I hadn't found more TT information online during our literally 18+ hours a day of feeding, I would have gone on thinking that, "Well, at least I know she doesn't have tongue-tie," and continued to believe that if I just tried harder, or just relaxed, BF would suddenly work. I felt like a completely inadequate mother as I continued to call the BF helpline, had BF helpers at the house, went to BF groups, and was told that I was doing everything right, the latch was fine, and DD was eating fine. Yet somehow I still couldn't get it, and she was constantly unhappy and I was in immense pain.

I was recently looking back at old photos and while I am grateful that we did get the TT diagnosed and clipped, I can't help being sad and angry at how terribly skinny she was! I'm not sure I understand how looking at that baby the BF helpers thought everything was fine.

Thumbwitch Sun 16-Sep-12 09:54:40

It would be really interesting to know the rate of tongue tie - if some interested paediatrician or MW was that keen, they might check all newborns, visually and manually, to see how common a problem it is. And when it's established that it's a reasonably high percentage, THEN they might start to view it as a more important thing to be looked for as part of the routine check!

I was lucky - DS's TT was diagnosed early, in his 2nd day - and snipped at 2wo.
I was lucky because I saw the BF expert (DS had troubles latching) and my visiting MW was also a BFing expert who heard the clicking and expedited the referral.
I was also lucky that the paediatrician in my hospital was able and willing to do the division - although he did say that it was only minor, posterior, and may make no difference if snipped. But he said he had seen minor TTs snipped --> major results, or no result; and major TTs snipped also --> major results or none. He gave me the choice to go ahead or not - of course I did.

I had a feedback form to fill in to discuss what difference the snip had made - massive - so I hope that I did contribute to further understanding of how much TT can affect feeding, however minor it appears. Wish I could remember the name of the paediatrician I saw. blush

perfectstorm Sun 16-Sep-12 12:59:38

Just want to back up Mawbroon's point on it being about more than breastfeeding. DH is severely tonguetied in his 30s, and he's had a rhinoplasty to try to sort out his breathing/rhinitis (it didn't work). He has also had real orthodontal problems due to the size and shape of his mouth - similarly, he didn't have enough room for his teeth on top. It causes massive and lifelong issues in some cases.

mawbroon Sun 16-Sep-12 13:29:06

Also wanted to say about this that awareness needs to be raised about lip tie too. It's almost impossible to get a lip tie treated in the UK unless you go privately to one of a few people who are doing it.

Lip tie can cause as many problems as tongue tie both with feeding, dental hygiene and oral development.

dr kotlow on lip ties

lookout Sun 16-Sep-12 18:36:15

mawbroon this is the problem we are encountering at the moment. I just can't seem to find anyone except the private clinic in Huddersfield, the other end of the country from me, to help, and even he can't give me any advice and has only offered treatment. I would love to be able to take ds2 to my GP, for them to say, yes lip tie - you can do this, or you can leave it, this might happen etc etc. But noone seems to know anything about lip ties or care about my concerns now that we are past the 6 month of breastfeeding mark!

Naylor71 Sun 16-Sep-12 18:39:24

Count me in for a campaign. Definitely needs to be checked in hospital before you leave

didireallysaythat Sun 16-Sep-12 18:48:48

Count me in.

When my first was born with tt the midwife fought to get us a hospital apt two weeks on.

When my second was born with a tt they said they could do the snip at the same hospital. What they didn't say was that it wouldn't be for 6 weeks so when we turned up for the apt the consultant refused to make the cut saying it should be done in the first week. I dug my heels in and broke down into tears and she gave way. But I had the advantage of knowing what the procedure is like for the relatively minor tt both mine had.

More support is definitely needed but it HAS to include the oral surgeons.

mawbroon Sun 16-Sep-12 18:56:13

lookout we did a 480 mile round trip last week to get ds1's tongue and lip revised in Huddersfield. After an incorrect revision at the beginning of the year, I wanted to make sure it was done properly this time. If you are able to make the trip, it is worth it IMO.

But parents shouldn't be having to do things like this!!!!

mawbroon looking at that link my DS has a class IV lip tie. How worried should I be about it? He also has a very high palate.

I'm worrying now that he'll have loads of problems, when I thought that having the TT snipped was all that needed to be done.

mawbroon Sun 16-Sep-12 19:16:01

Obviously I can't predict what troubles your son may or may not have, but to give you some idea, ds1 had tongue tie/lip tie and high palate.

We have just had tongue and lip revised and he is going to undergo the first phase of orthodontic treatment shortly to expand his palate and even up the jaw sizes.

He will need to wear headgear at night to bring his face out (can't think of any other way to put it!) because his facial structure is not developing correctly. This is due to mouth breathing (he can't breathe through his nose very well, I think because the high palate encroaches on the space for the nasal passages) and tongue thrusting because of the incorrect swallowing produced by the tongue tie.

I asked my NHS dentist a while back about the high palate and he just shrugged and said it wasn't a problem. No doubt he would wait until he is 12 or so then pull teeth to get them all to fit.

Are you familiar with Dr Brian Palmer's work?

MoJangled Sun 16-Sep-12 20:13:38

Okey smokey, I've emailed Mumsnet HQ to ask what has to happen for this to be adopted as an official campaign. Great to see so much support, although not great too obv...

While we're waiting for the verdict from MNHQ, can we do a poll of campaigning offers? What would you be able/willing to offer in support of a campaign? Here's my kick start for a roll call and offer list:

MoJangled: DS 80% tongue tie, divided at 3w, now 22mo and still symptomatic but referral refused. Can draft policy, write letters, meet MP/Ministers.

whenwill Sun 16-Sep-12 20:24:14

Me too. In the hospital dd wouldn't latch but paed. said dd was chewing not sucking but that she didn't have tt (it was posterior; also has upper lip tie) and i should just keep pressing the screaming baby to my breast until she go the hang of it: 'she'll never learn' if she's in the cot.

I am a trained and qualified nanny and maternity nanny who is capapble of supporting a mum to latch, however after birth (where unfortunately control is so often handed over to others), no sleep and generally feeling overwhelmed or have time to research or think straight, I just deferred to those around me (as so many mums do). I had MONTHS of supply issues, not leaving the house, dd's reflux, miserable time and miserable baby (and now guilt).

There are so many vulnerable mums and babies out there who switch to formula solely because of this issue (including those who are not pushy and/or can't afford to get it sorted).

I am shocked and appalled at what seems to be the complete absence of knowledge, training and the actual misinformation given out by the NHS to new mums about this issue. The fact that some mums KNOW they are dealing with tt but the NHS makes them doubt themselves or just refuse to acknowledge it is so distressing. (any good NHS stories out there for another thread?!)

There should be national standards and options e.g. same advice whether to snip, age of snip with or without anaesthetic etc. All those who check or come in to professional contact with newborns should be aware of tt and know who to go to to be properly and swiftly (so baby can feed asap) diagnosed and treated if needed. It would be so simple to end all this grief.

whenwill Sun 16-Sep-12 20:31:06

Are we allowed to give out short info. leaflets to maternity units/gps/hvs/midwife's at midwife appointments and do this repeatedly as probably too busy to look most of the time. Include how difficult it is to spot. What leaflets though? go to mp surgery.

MoJangled Sun 16-Sep-12 20:37:39

Fab whenwill , your knowledge base will be invaluable for informing what we should be asking for and suggesting solutions. Likewise mawbroon obviously a guru. Fancy sticking yourselves on the roll call?

I'm in.
I only knew to check DS for TT after my SiLs horrendous experience with her DC1. We ended up having DSs snipped privately within a week, neighbour with same age baby had to wait until her DS was 8 weeks to have it done in hospital, by which time she was in bits.

There's a ridiculous amount of misinformation and accepted old wives tales about TT amongst HCPs, they don't even seem to agree amongst themselves!
The Back To Sleep campaign has had a massive and long lasting effect, and of course TT isn't a safety issue, but it shows how a campaign started by one mum can make a huge difference.
Re-educating HCPs about TT could make a huge change to BF stats and of course improve all the associated issues such as reflux and speech/jaw problems etc.

Rant over... blush

perfectstorm Mon 17-Sep-12 02:43:36

Reflux is linked?!

Nobody ever told me that. I was expressing, and DS would regularly bring up whole feeds. Was horrendous.

mawbroon Mon 17-Sep-12 08:09:56

Yes, reflux is linked

Dr Kotlow is one of the leading experts on tt

HannahKG Mon 17-Sep-12 10:31:45

Both my sons had tongue tie that prevented breast feeding, we had a miserable time trying, having lived under two PCTs there is no consistent referral procedure and it is not taken seriously enough, I agree it should be included in the initial checks before leaving hospital, I would also support any campaign

mawbroon Mon 17-Sep-12 21:09:53

Count me in. I could recount ds1's story over and over! He has had almost every symptom that there is of untreated tongue tie!

Seriouslysleepdeprived Mon 17-Sep-12 21:23:26

And me! DS had a 100% TT & couldn't move his to hue at all. It still took 8 HCP & six weeks before I got it sorted. Went privately in the end & they were shocked I had managed to feed at all.

Ive seen at least two friends stop BFing because of TT. One won't try to feed the next one at all. Both were missed initially.

RowanMumsnet (MNHQ) Tue 18-Sep-12 09:41:03

Hello

Thanks for directing our attention to this one - sorry to see that so many of you have experienced poor diagnosis/treatment.

The campaigns team is rather snowed under at the moment with upcoming activity on our miscarriage and rape awareness campaigns (lots happening over the next couple of months), so we're unlikely to be able to do anything high-profile on this for now, I'm afraid.

We're very happy for you to organise among yourselves using Mumsnet as a base, and we can help push things out for you using Twitter and Facebook and so on. We have found in the past (the 'Career women make bad mothers' bus campaign and the Respite for Riven campaigns being cases in point) that MNers are often at their most fearsome and effective when they take ownership of something.

Do let us know if there's anything specific you think we can do (report your post to make sure that we see it) and we will do our best to help out. And when things are a bit less frantic (probably in the new year) we will have another look to see whether there are extra ways we can help out.

Thanks
MNHQ

cacaolat Sun 21-Oct-12 16:33:30

My son was born 5 days ago and he had difficulties with breastfeeding from the beginning. My wife suspected a tongue tie and this was confirmed by the visiting midwife. We where told that it will take at least 10 days to get this removed via the NHS. We found a recommended specialist, who came round investigated and removed the tongue tie on day 3 of our sons live. We are really happy as the results where visible immediately. He can suck better and for the first time he had much longer periods of proper sleep. I think it was well worth to get this done privately rather than wait for 2 weeks or more.

CouthyMowEatingBraiiiiinz Wed 21-Nov-12 04:41:30

Count me in. Will post full details at a more sensible hour! grin

Missrai Tue 08-Jan-13 13:33:56

I've been struggling to BF my 10 week old son on one side and it was suggested yesterday at the breast feeding clinic that he might have tongue tie. This is after a horrific weekend of mastitis.

Is the procedure painful? Is it worth me trying some other positions etc before asking for a referral?

madscimum Sun 20-Jan-13 10:19:57

If he's got tongue-tie, you'll want to get it looked at. There are issues beyond BF, including improper jaw development which can lead to dental problems in adults. (I had this; to say it was not fun to fix is a big understatement -- fear of putting DD through the same thing is what kept me continuing to look for a solution when everyone said she was fine.) It can also impact weaning -- some babies don't show much trouble BF but then have huge difficulties with solids as their tongue can't move things around their mouths properly.

Make sure you find someone knowledgeable. As I said upthread, many health professionals are insufficiently versed in TT. The person you find show know about both anterior AND posterior ties, should be able to revise them WITHOUT general anaesthetic (not necessary for children of any age, no matter that some say older babies need it), and should provide information for proper aftercare (stretching and tongue exercises).

KafCurt Tue 22-Jan-13 08:11:14

Please can everyone read, sign and share with others our petition to get Lip Tie checked at birth: epetitions.direct.gov.uk/petitions/44390.
To follow our campaign please like us on facebook at: www.facebook.com/LipTieSupportGroup

Thanks!

CheungFun Tue 22-Jan-13 08:20:34

Signed and shared the petition via my Facebook. I think they should be checking for lip tie and tongue tie at birth, it would be quite straightforward I think to check for it and I don't think people are very aware of it. I never heard of it until I saw something about it on MN and realised my son had lip tie!

CoffeeCrazedMama Fri 25-Jan-13 11:52:06

Have just signed with much gratitude that this is being addressed. My ds, now 16, was (in retrospect) a classic case; v grumpy, windy baby, I developed severe mastitis before I had even been discharged from midwives, despite having had no problems breastfeeding my older two dds. Ds didnt speak until he was well past his 3rd birthday, except for a few words which I realise now are words which require less tongue mobility than others (eg 'car', bless him!). Noone at anytime checked him for tongue tie - I knew nothing about it myself (which of itself upsets me as I was always pretty informed otherwise). Could have wept on Sunday night watching 'Call the Midwife' when, referring to a baby who was having trouble latching on, Sister Evangelina ordered 'Check him for tongue-tie'. If only she'd been on my local team (who hardly ever bothered to check on us anyway as 'Oh he's your third, you don't need us' angry.

Only when he was about 12 when DS was having braces fitted was it noticed. When he was given the night retainers they had to be snipped around the tongue-tie as the bottom one was rubbing the webbing and hurting. He's never been very chatty which we put down to being surrounded by talkative sisters but he has explained to me he often can't be bothered because it is an effort. His French teacher complains that though his written work and grammar are excellent he is 'lazy' in oral work, not joining in discussions - feel a bit precious saying its his tongue!

I'm just cross that this wasn't picked up and dealt with at neonatal stage. I can't help but feel that a very difficult baby and toddler may have had a happier start in life otherwise!

loubielou31 Mon 18-Feb-13 21:13:57

Both my DDs had tongue ties, DD1 was diagnosed early but we had to wait a month for it to be snipped by which time I had had dreadful issues with feeding (and a horrible bout of mastitis) and breast feeding was not successful beyond a couple of weeks.
DD2 was diagnosed and snipped on the day she was born although that is mainly because I asked if someone could check. DD2 was breast fed until weaning at six months and I stopped when I was ready to.
A friends DS has had a tongue tie snipped today age 6, much simpler when they're tiny babies.

I'd like to bump this up.

I'm a regular on the breast/bottle feeding board, and there are so many women who, thanks to people on the Internet, are discovering the reason they're having pain/their baby isn't latching/ baby is losing weight etc is due to tongue and/or lip tie.

This is a serious issue, and is woefully missed by a ridiculous number of healthcare professionals.

Both my DC were checked before leaving hospital - both had their ties - severe - missed.

There needs to be education for healthcare professionals. There needs to be a quick route to get these ties properly revised.
There needs to be an end to 'oh, they can stick their tongue out/posterior ties/upper lip ties don't cause issues/ it's just a short tongue'.

My DS ended up hospitalised at 2 weeks due to a 15% weight loss because of the undiagnosed tie. I'm not alone. Not by far.

This is a huge issue and needs highlighting.

readysteady Sat 27-Jul-13 09:42:16

I saw my sons tie the night he was born and all medical staff refused to look or accept it could be a problem even the breast feeding midwife just looked at his latch and said it was fine! It bloody wasn't! It took me pushing my GP to get referred at DS was snipped at 3 weeks old the consultant that snipped it said it was severe and he wished more babies were sent that young most babies he saw were over 6 months! I told him how awfal the hospital was and he was angry. It's the maternity services refusing to even accept this! Sooo cross! If I hadn't known about it (due to my tie) I would have given up breast feeding, such a shame and a disgrace in fact! So BUMP from me too!

Jacky43 Fri 02-Aug-13 12:53:37

My son has just had his tonsils and adenoids out and the consultant agreed to release his tongue tie at the same time ... He is four and has had a lot of speech therapy. His tongue tie was severe 1cm cut. His speech was immediately clearer. More should be done re: tongue ties for new born babies, it is such a simple procedure at that age. A really big thank you to James' surgeon - she is fabulous.

MrsWooster Sat 03-Aug-13 07:05:13

We have reflux, scanned nipples, long feeds with consequent exhaustion and PND. I believed tie had regrown (snipped at four days) but various HCPs inc consultant, albeit very kindly, have assumed I'm a neurotic mum. ENT consultant yesterday told us that tie HAS regrown and, at 19 weeks, is now too fibrous to snip and DD will need a GA to cut it to prevent teeth probs etc later. They won't do this til over two years old. If they'd just LISTENED anD taken TT seriously all our problems would have been averted. Please MNHQ, consider a campaign to add this to neonatal check.

shelley72 Sat 03-Aug-13 07:23:51

I would support this. Dd1 TT was missed twice by two separate paeds in hospital. Took a few days of agonising feeding (she is dc2) before the midwife spotted it on a routine visit and snipped it a day later.

Fast forward three years. Five weeks ago I had dd2. I specifically asked at the paed check for him to check for TT. He said it was fine. I asked him to make sure. she was ok he said. Sure enough on midwife check she did have TT which the midwife snipped there and then on my sofa.

Now I was lucky, as I had a very experienced midwife and it was dealt with very quickly. I realise that not everyone is so lucky. My midwife said herself that she is making it a mission to educate her midwives, and those in hospital about TT. She did say however that the doctors were just not interested. It definitely needs addressing.

tasmaniandevilchaser Sat 03-Aug-13 07:49:41

I would also support this, I was thinking about why on earth it's not part of the newborn check to look for TT and then saw this thread! The 1st 6 mths of DD's life was miserable for me, I think getting her TT snipped could have solved a lot of our problems

superbagpuss Sat 03-Aug-13 07:59:17

can I add to this
TT is hereditary
dh has still got a TT as back in the seventies they didn't cut it shock
it affects the way he eats, talks and other things blush
I can't believe the ignorance around this issue.

flatmum Sat 03-Aug-13 08:05:40

in my local area it is part of the newborn checks (East Surrey) now. Ds2 was born in 2007 and it was immediately obvious to everyone (he was over 90% tt and had a very forked tongue) but I had to search around for some woman in a neighbouring area who would cut it. so he was 3 or 4 weeks befor he was done (luckily and amazingly he was still able to bf). ds2 was born at the same hospital and they picked it up in the newborn check the day he was born. the hospital now has a weekly clinic on site and trained mw do he was done in a few days. of course he was born the day after the clinic so a couple a week would be good as he did have trouble latching for the first few days but I guess that's a lot to ask for resource wise.

ghosteditor Sat 03-Aug-13 08:06:19

Yes. Only it was DD's lip tie which caused us issues, more than her minor TT.

My TT may well be the cause of my migraines, teeth grinding, tension, and neck and shoulder pain hmm

flatmum Sat 03-Aug-13 08:08:38

ds3 sorry in 2010. is it more common in bots or is that just my perception? all the other babies I saw at the clinics were boys.

MrsWooster Sat 03-Aug-13 19:43:39

Just reread my post: scabbed, not scanned nipples!

LadyDowagerHatt Sun 08-Sep-13 08:03:07

Have finally had 10 week old DD's posterior tongue tie diagnosed. I always thought something was wrong following low weight gain, did a bit of internet research and suspected tongue tie. The midwife, HV, GP and a breastfeeding leader didn't spot it and I got told maybe I am just one of these women who doesn't make enough milk. I contacted La Leche and the consultant spotted it immediately - it was a sneaky posterior one but there is still no excuse for it being missed in my view. She checked for an upper lip tie first as you rarely get that without a tongue tie - the ULT was so obvious that I am absolutely staggered none of the other HCPs used the same process to identify it. I am now trying to feed and express, desperate to save bf for us, all the time thinking it shouldn't have to be this way if it was a standard check done at birth.

Mouseface Wed 18-Sep-13 11:51:38

My son was tongue tied but it was NOT discovered at birth, even though he couldn't latch on, due to a large hard and soft cleft palate.

We didn't have a clue until his plastic surgeon cut the tie during a cleft palate repair when he was 9 months old.

We felt shocked and appalled that she was the first of many doctors and specialists who had already seen him, to take action, but also that she just went ahead, without discussing it with us, informing us what it even meant etc... sad

BabyWitch Fri 27-Sep-13 21:15:45

I'm in! I'm in!

To the poster who asked how many babies have TT: estimates range from 1 in 8 to 1 in 10.

This is all too familiar. I was in hospital for 2 weeks with DD, she was seen by at least 3 paediatricians, countless doctors and MWs... She was four months before she was diagnosed by a private lactation consultant - over the phone!

We had a catalogue of what I now know were classic symptoms of TT: baby weight loss, baby weight slow gain, bleeding, blistered nipples, thrush, clicking; a cycle of baby at breast endlessly, baby falling asleep at breast, then waking up hungry after just a few minutes.. Etc

I cannot describe the heartache and anxiety that this condition caused. Whilst I tried, I was never successful at expressing, so my supply hung on by a thread. Instead of actually helping me, the 'professionals' pressured me into introducing formula... Then, when I'd finally worked out what it was, I went to my GP who said, as she knew nothing about TT (and didn't seem interested in learning) she would refer me to a paediatrician - but we would not be seen as a priority because 'she's taking a bottle, so it's not an emergency.' !!!

Apparently my hospital has a policy of not diagnosing, and therefore not treating TT, as they say they don't have the budget... Seriously, how much can it cost? (They don't seem to have the same budget issues when it comes to snipping a part of the female anatomy during childbirth.)

What is this myth that TT does not affect BF?? So many people misquote NICE guidelines, saying that TT doesn't affect BF, and mustn't be snipped - this isn't what it says at all!

Also would like POSTERIOR TT to be educated for. This is far more subtle and difficult to diagnose, but can be equally as debilitating.

BabyWitch Tue 08-Oct-13 20:37:51

Oh and add forked/ heart-shaped tongue to list of symptoms above.

FalseWidow Sat 19-Oct-13 22:51:51

Definitely needs more awareness. My DC2's tongue was tied right to the very tip, I struggled with BF-ing and couldn't work out why since I had had no problems with DC1. No one 'medical' noticed, I noticed, but only after about 5 days - I had never even heard of it other than as a figure of speech. Took me another week to get treatment - quite fast probably, but affected my DC's latch permanently - BF painful, but bearable, throughout. Can't see why it can't just be simply one of the post-natal checks.

ishell Thu 21-Nov-13 12:52:35

Early detection can be the key to successful breast feeding. It's vital it is spotted and dealt with as soon as possible.
Please sign this petition campaigning for a mandatory tongue tie check in the routine postnatal examination. It's great that they already do it in East Surrey, but lets get it done everywhere!
epetitions.direct.gov.uk/petitions/57164

CuriosityCola Thu 21-Nov-13 12:59:32

I would do everything I can to promote a campaign for changes to be made. The bf campaigns aren't worth their salt when you get a diagnosis on day 1 and have to wait until day 7 to see a specialist. By then my chances of bf ds2 were in tatters.

Marshmallowflowers Sat 21-Dec-13 20:44:38

Count me in too, this whole issue infuriates me. Both my girls were tt, my first ended up in hospital in her first week as she lost so much weight, my second I realised as soon as she was put on me to bf as she behaved the exact same way as her sister. The most appalling thing is I saw numerous midwives and dr in the hospital as I was a high risk pregnancy and none of them noticed her tt as it was posterior. A paediatrician in the special care unit where I was with my second daughter even wrote on my notes that her tt was insignificant!!! When I left the hospital it was operated on locally twice unsuccessfully. Eventually I was refered to Southampton where it was done and she started to bf, a complete miracle as she was 3 months old by this stage!!! Anyone who deals with newborn babies, and anyone who promotes breastfeeding in any way MUST have a proper knowledge of things that can prevent it being successful. THIS SHOULD BE SORTED In the labour ward before discharge from hospital!!!!!!!!!

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