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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?

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!!!!!!!!!

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.

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

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.

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

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

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.

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

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.

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

Just reread my post: scabbed, not scanned nipples!

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.

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 08:05:40

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.

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.

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

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.

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.

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.

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!

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.

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.

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!

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!

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!

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).

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?

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