to wish babies were checked for tongue tie routinely before leaving hospital?

[MixedBerries]

Now I don't want this to descend into a slinging match about feeding choices (which usually happens whenever bf or ff are mentioned) but is it really unreasonable to expect that this is something that should be checked for by the paediatrician before leaving hospital? It would take about 1 minute.
According to NICE and UNICEF (who I assume know a thing or two) it affects 3 to 10 per cent of all babies yet at least 5 midwives, one health visitor and one paediatrician failed to check or notice it in my DS. It's not even a "hidden" posterior tongue tie. Once it was diagnosed (at 2 weeks following bleeding nipples, weight loss and failure to latch), we had to wait a further 2 weeks to see the lactation specialist as she was on holiday and is the only one in the area qualified to clip it. They we waited a further week to have it clipped. That didn't work so we had to travel half way across the country to see another specialist who clipped it again at 7 weeks. By this time DS had lost interest in boob feeding so I've been trying to get him back on and expressing in the meantime.
Now at 13 weeks, he completely refuses the breast and I don't have the time to express every 3 hours so essentially, once my freezer stash has run out, it's the end of bf. IF anyone had checked, I've been told it could have been sorted the day he was born and all this could have been avoided.
So in the light of "breast is best" being repeated over and over by the health profession, don't you think it's something fairly fundamental that could be checked for by people who are supposedly here for the best interests of our children? I'm so bloody angry. (Yes, I KNOW ff won't kill him but we really wanted to bf, particularly since asthma and allergies run in the family on both sides. And my point is that this could have been avoided so easily).

Does anyone know the outcome of this being nominated as a MN campaign? How long does a decision usually take? I know nothing about MN campaigns ie who actually does the campaigning or what it involves.

Oh and please keep signing in the meantime. Please, please, please.
www.gopetition.com/petitions/midwives-to-diagnose-and-treat-tongue-tie/signatures.html

I've signed.

I've signed and shared.

Signed and bump.

Hello there

Blimey this is a long thread

Thanks for bringing this one up. We on the Campaigns team do appreciate what a significant issue tongue-tie can be, and agree that it probably hasn't been given the attention it deserves.

Most of the first part of this year for us is going to be taken up by the ongoing miscarriage campaign, plus a couple of other issues that MNers have indicated they feels strongly about over the last few months (such as postnatal care - which could possibly have a tie-in (no pun intended) with the tongue-tie issue). So it's unlikely, I'm afraid, that we're going to be able to make a big noise about this individual issue in the near future.

We will, however, bring it up with the UNICEF Baby-Friendly Initiative team in the UK and see if it's something they could have a look at.

In the meantime, do feel free to use the board to organise among yourselves, and drop us a line (via the Report This Post button) if there's anything specific we can do (such as a Campaign of the Week slot).

Thanks.

First post on mumsnet, sorry for the long post, hope it's not too late for the discussion ?

We must have been lucky - since we had big feeding problems with our first baby, we made a big fuss with the second and managed to get to see an excellent bf consultant, who immediately diagnosed tt, at about 3 days old. It was always an option to get it snipped, though we didn't do it till about 3 months, after we'd had a period of poor weight gain. It was such a simple operation - not remotely stressful. Have to say we had 2 weeks waiting after referral, which of course would have been no good for someone who couldn't feed at all.

It is such a shame that so many people have struggled or given up on feeding through lack of support.

A couple of points strike me concerning the overall policy/attitudes on tongue-tie:

1. The fact that some people are able to breastfeed with a tongue-tie is irrelevant to those who can't. To be honest this sounds like a lot of parenting advice which blames mothers - because a few people manage then you should be able to as well.

2. The fact that tongue-tie snipping does not work for 100% of people is also not a reason for not doing it. Not working for a few people is never an argument used against pharmaceuticals. The studies cited by NICE found something like 80% success rate for tongue-tie snipping improving breast feeding. This would be considered an incredibly high success rate for most medical interventions.

Hi whereisthelid, welcome to MN. Thanks for your post. I'm pleased to hear a positive story here amongst the tales of woe! It really does seem to depend on where you live and how well-trained the local health providers are as to whether you get anywhere with resolving TT or not.

I too find it astounding that NICE guidelines are ignored despite TT snipping being such a cheap and highly effective intervention. It's so frustrating being told over and over that breast is best but yet when you encounter an easily resolvable problem, you're pretty much on your own or told you're doing it all wrong. Finally, you're told that formula feeding isn't so bad after all and probably you should do that.

So many people wanting to bf have been let down in this way.

Hi everyone, I realise I am arriving to this several months late! But I have just created a MN account specifically so I can post here as I feel so very strongly about this, MixedBerries YANBU! I wish I had discovered this forum a couple of months ago when I was in the midst of BF/TT room 101..

My experience: DS1 was born in March by emergency c-section. BF was extremely painful from the off and DS seemed unsatisfied, wanted to feed constantly and for ages etc. Succession of midwives came to help - the support invariably seems to consist of grabbing your boob and the baby, bringing them together violently, saying it's all okay and then walking off - you never get the same person twice.

Only because a friend of mine had experienced TT with her baby did I have a clue it might be an issue. On day 2 with nipples already ravaged I asked one MW if that could be it, she took a look and said she thought I was right. I expected some kind of process to be triggered upon this discovery, but sadly no.

Although this is a large hospital with a major SCBU, and 300 babies born per month, they have only 1 person trained to do TT divisions. Guess what? She was on 2 weeks holiday when DS was born. I requested to stay an extra night in hospital until the Monday, in the belief that surely someone else must be qualified and would turn up to work and do the snip before we went home.

The best we got was a referral to the TT clinic at a hospital 30 mins drive away for a few days later. So effectively I was sent home without BF being established and without really any suggestion as to how I was supposed to feed my baby in the meantime, and an expectation that 5 days after major abdominal surgery I could travel to another town for DS to receive the appropriate treatment. I think this is appalling, though having read this thread it's by no means the worst experience!

They confirmed a severe TT and DS had the snip - it's hard for the parents to watch, but is over so quickly for the baby they've forgotten in a moment, and they feed immediately so are comforted - I really think it's fine. By this time I already had so much damage I couldn't feel any improvement, but she said it would all right itself soon. We had no follow-up after this procedure, no number to call etc. just sent on our way.

I then persevered with BF for the next 6 weeks, in terrible pain, with lacerated nipples, DS and I both crying at feeds, me coming to dread every cry and awakening because it was so unbearably dreadful.

I had umpteen MW, MSW, BF 'experts', HV observe my latch and tell me that it all looked spot on and would all get better soon. Breastfeeding drop-ins became my way of life. Pretty much all these professionals offered different advice, but the consistent message was that I had to BF and that to stop was not an option, regardless of the physical and emotional cost to me. I didn't want to stop - I believed so much in wanting to do this for my baby - but actually to anyone who saw us I can't believe they encouraged me to continue given how traumatic it was.

At the end of my sanity and on the verge of giving up, I hired a private LC for a consultation in my home. On arriving, the first thing she did was to examine DS and said that the TT had not been snipped sufficiently for him to be able to feed, as he couldn't cover his bottom gum with his tongue, and that he also had a rather high palate which would have exacerbated the problem. She said it was a miracle I'd managed to carry on feeding him for so long, but also that as he grew it was completely unsustainable as he'd be unable to get enough milk, even if I could continue to bear it (which I couldn't).

She was the first person to even look at him since the original snip, despite having explained the initial TT to everyone we'd sought advice from. Nobody had ever so much as glanced at his mouth, let alone done a digital examination. What on earth is the point of these so-called BF specialists if they don't even look at the baby?

After a lot of discussion, DH and I decided to have the snip done a 2nd time privately at a cost of £120 - not an easy decision to reach but we felt it was the right one. There was no point trying to go back via the NHS - I suspected it would take weeks and we'd end up with the same person who cocked it up 1st time. I discussed with my lovely GP who confirmed my suspicion and said we were doing the right thing.

After the 2nd snip, feeding improved radically for DS in that he was obviously getting more in - I could actually hear swallowing for the first time rather than endless sucking, it was a revelation! However I'm afraid to say that it never really improved for me, painwise. At 12 weeks I couldn't take it any more and started to drop feeds, and now in week 17 I'm mix feeding, which has improved everyone's life immeasurably.

I feel incredibly angry with a system that I feel is letting mothers and babies down so badly. The pressure to breastfeed is tremendous, but the support to do so is wholly inadequate if you have anything other than very obvious technique issues. I find it a complete joke that I had one after another badly qualified, patronising women come and show me a knitted boob and go on about nose to nipple when I was 6 weeks into this hellish time.

I feel that my baby and I were deprived of those precious early weeks that we can never have again, that his health was jeopardised when he was barely getting enough in and I was repeatedly told that his erratic/marginal weight gain was okay, and that my mental and physical health were jeopardised too. My nipples have been permanently damaged, and often I couldn't cuddle my baby as it was so painful to hold him against me. All that time I was made to feel I was doing the right thing by persevering, that it was my fault it wasn't working and I just had to keep trying harder to get it right etc. Now I think that was wrong and I would have been doing the right thing by us both just to stop!

I know MNHQ have said they don't have capacity to campaign on this at the moment, but I really urge you to do so as soon as possible. I'm happy to take part in any way at all. I believe this is a really serious issue that is affecting many women whose babies TT go unidentified, they struggle with BF and give up feeling wretched - how very very sad that is, and how very absurd given the evangelical promotion of breast is best by HCP.

I realise this is not brief at all, but it's the first time I've written the whole thing down so apologies!

yanbu.
all my kids have tongue ties but there lucky they didnt effect feeding. i think the midwives in my area have recently been trained on this as every single one who saw ds mentioned it to me every day every single time i saw them

I'll help too, DS2 had double posterior tongue tie. Undiagnosed until he was 6 weeks...ouch. Such a difference as soon as it had been cut. We had it done in Tokyo and the specialist believes it to be linked to SIDS. He routinely measured oxygen levels while feeding, before and after the procedure. Scary stuff - and so much pain and anguish could be avoided if they were checked.

OP, I completely agree with you. The hospital's failure to diagnose TT properly (a MW spotted it but the paediatrician at the 72 hour check said nothing and the LC was not in that day) contributed to my PND as dc's feeding was never properly established. I struggled to express and feed with top ups etc after dc lost 12% of her birthweight (although the TT was privately snipped) I never sorted bf out properly. I felt guilty, sad and at times angry with dc. Tbh I'm still not over it, not so much that individual issue as the atmosphere of stress and misery it caused.

Echocave I really sympathise with that - your feelings sound spookily familiar. I don't have PND but think I was pretty close at times. Yet another important reason why this really ought to be better understood/ diagnosed/ treated by PN care teams.

Found this petition on the government website today, calling for all babies to be checked for tongue tie at birth, with any issues resolved within three days. I would urge everyone to sign. This is such an important issue, and the experiences above show how much agony it can cause parents and children both in the first few weeks and later on if not resolved quickly. YANBU. If mumsnet were to launch a campaign, I agree this should be it.

epetitions.direct.gov.uk/petitions/36614

epetitions.direct.gov.uk/petitions/36614

Yanbu.

I was lucky that my first DC had the tt snipped within 2 weeks, but it was spotted and dismissed by the paediatrician at his newborn check.

He cried so much and struggled with weight gain while causing me cracked nipples. The midwife spotted it when he was about a week old and immediately arranged his appointment.

It made such a difference and he went on to bf happily for 2 years.

I still feel bad thinking back about him not getting enough milk. :(