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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?

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!

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