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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.

waitandseepudding Sat 15-Sep-12 21:18:32

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

Message withdrawn at poster's request.

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!

PeggyCarter Sat 15-Sep-12 22:17:24

Message withdrawn at poster's request.

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

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