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Tongue tie woes and the NHS

(21 Posts)
MicrophoneFrog Wed 21-Sep-16 12:52:55

DD is four months old. We struggled a lot with breastfeeding. I had bleeding nipples from day one, she often really struggled to feed, and lost too much weight. A midwife "checked" her tongue by peering in her mouth on the dark postnatal ward, and declared she did not have tongue tie. A doctor told me she was "perhaps just a lazy baby".

After a little while the bleeding healed but I had sore, bright red nipples. I was told it was thrush and given cream for it.

DD would feed for hours and hours and hours on end. I now realise it was way beyond normal cluster feeding, but at the time I was just told that babies like to feed a lot.

She also had bad reflux, she would be sick constantly (and still is). I took her to the GP and she was prescribed gaviscon and ranitidine.

I spoke to numerous midwives, HVs etc, who watched her feed and said it looked fine. A couple of people did ask if she had tongue tie and I said no, she'd been checked. But she was really unsettled, never ever seemed satisfied, still often had trouble latching on, and in the end I'd just had enough and I gave up and switched to bottles at nine weeks. Once we found the right bottle, things have been much better.

I recently got talking to a couple of people at baby groups who said that their babies had exactly the same symptoms. Both their babies had tongue ties. It got me thinking and I decided to take her to an ILBLC, partly out of curiosity.

She's got posterior tongue tie.

If this were AIBU I'd ask...AIBU for being angry at our postnatal care?? But as it's not, I just wondered if anyone was in a similar situation and whether I should look into doing anything about it or if there's no point now that I'm not breastfeeding?

OP’s posts: |
melibu84 Wed 21-Sep-16 12:57:23

YANBU, the midwife should have picked up on it straight away. Mine picked up on it the minute my DS was born.

You don't need to do anything about it now. In rare cases, tongue tie can cause problems with speech, but you won't know until she's older. Then, you can ask your GP to refer her for the procedure to have it removed. One of my cousins has tongue tie. She's 20, and does not have any problems with speech.

Soubriquet Wed 21-Sep-16 13:04:57

If you can persue it, please do!

My dd has tongue tie. She was diagnosed at birth but wasn't snipped as no one was on duty at the time. It was picked up again at her 8 week checkup and then lost in the system. Now she is 3 she is still tongue tied and whilst it doesn't affect her speech or eating habits it's very noticeable. Doctors won't touch it now because it doesn't affect her

I just hope she doesn't become self conscious about it as a teen

MicrophoneFrog Wed 21-Sep-16 13:25:49

That's interesting soubriquet. Do you mind me asking how it is noticeable? Can you see it when she talks ?

OP’s posts: |
crayfish Wed 21-Sep-16 13:46:32

In my experience they are dreadful at picking up tongue tie. I was told by the midwife at the hospital and the feeding advisor that DS didn't have one and then my NCT feeding advisor said he did. I managed to get a referral to get it snipped and the HCP at the hospital said although it was posterior it was actually one of the worst she had seen! Getting it cut was very straightforward, it did bleed but was over very quickly and there were no long term effects.

Soubriquet Wed 21-Sep-16 13:47:58

Yes I can see it when she talks and when she sticks her tongue out at me

Meinthecorner Wed 21-Sep-16 13:54:59

I'm sorry you have been through this. I had a very similar experience almost four years ago when my son's posterior tt was missed until he was 6 weeks. I was told there was nothing wrong, we'd be back in hospital if he continued to lose weight, I had to 'toughen up' etc by several hcps until I saw a lactation consultant who identified the problem and it was snipped at 8 weeks. It wasn’t the end of our breastfeeding journey although we continued to supplement with bottles. I have told my story to PALS, the maternity liaison committee basically anyone who will listen. Cuts in funding for bf support and lack of training of hcps will not help.

The only positive is when my daughter was born last year I knew what to do. I knew she was tongue tied (two mws and a pediatrician said she wasn't) so I got her done privately.

Interestingly I found out through all of this that I have an uncorrected posterior tt. I had some speech therapy aged 4/5 but it had no further impact. The associated lip tie had to be removed by a dentist as it created a gap in my front teeth. Nothing is done about lip ties as they often sever themselves (my son has already ripped his).

MicrophoneFrog Wed 21-Sep-16 14:36:42

meinthecorner yes, the ILBLC said I have quite an obvious tongue tie. I had no idea! She even suggested I might want to get it corrected myself.

It is pretty frustrating to be honest, and depressing that it seems to be so common. I feel the same as you, that at least I will be more prepared when I have my next baby.

OP’s posts: |
Soubriquet Wed 21-Sep-16 14:47:19

Not sure if you can see this very clearly because she won't stop wiggling her tongue

MicrophoneFrog Wed 21-Sep-16 14:55:47

Thanks soubriquet smile

I have to say I would never have noticed it before DD was born a few months ago, I didn't even know what tongue tie was then. Even though it turns out I have it myself! So you might find that she isn't bothered by it as she and others don't realise it's not "normal"? I hope it doesn't bother her.

Were you able to breastfeed her?

OP’s posts: |
Soubriquet Wed 21-Sep-16 14:57:56

No. She couldn't stay latched and caused me terrible pain everytime she tried.

We had to bottle feed her in the end

PikaPikaPikachu Wed 21-Sep-16 15:01:34

They usually say that if they can stick their tongue past their lips, then the tongue tie not severe enough to affect feeding/latching/speech. My DC had a tongue tie and could barely move her tongue out. It made a m shape like s snake. Ended up bottle feeding due to lack of supply. She ended up tearing it naturally in a bad fall so luckily never affected speech at all

Lamby80 Fri 23-Sep-16 22:53:55

I am also having issues getting my son's tongue tie sorted. Born earlier in the week and has a prominent tie, to the point the midwife said it was the tightest she has seen. He won't latch on and if for a moment he does it is extremely painful for me. I have called so many places today, private midwifes etc but the earliest I can see someone is Tuesday. She said she may not actually cut it if I am not still attempting breast feeding. We are currently cup feeding which in itself is hard work but he is now losing interest in latching on. How can I keep this going until Tuesday? And does anyone have any advice on who I should contact to try and get this sorted? The midwife said he will probably have a speech issue when he is older if we don't but so far have just had doors closed in my face and am starting to get disheartened!
Thanks x

Pippen123 Sun 25-Sep-16 08:46:43

my 6 week old daughter was diagnosed with posterior tongue tie at an NCT baby cafe (midwives missed it) and had it snipped on Tuesday- I've read that the improvement in feeding is almost immediate but since the op she she is much worse at latching in than before and were having to use bottles now. She cries at my breast and feels like she hadn't got it in her to try anymore. I'm waiting to hear back from breastfeeding support worker but I'm really concerned we've done her more harm than good. She won't even open her mouth as wide as before for a bottle. Does anyone have any experience if this? Almost feel like giving up as I can keep up with expressing!

PerpetualStudent Sun 25-Sep-16 08:59:59

Another one here - my hospital, post-natal midwife and GP all missed my DS's TT. Even though he dropped from the 9th to the 0.2nd centile in first 2 months.
Took a HV referring me to a BF counsellor, who finally diagnosed it and referred me. It was snipped at 10 weeks and definately made a difference.

I discovered through this my maternity ward had a policy of not checking for TT because the head peadiatrician didn't 'believe' in it. Wish I'd taken a complaint forward to PALS, maternity and post natal services can be so disjointed and you end up having to run from pillar to post dealing with different services who don't engage with each other.

Could you get a referral for the snip and try again with the BF in the meantime? There can be a fair wait to get it done on the NHS, so if you get it booked you have some thinking time and options at least?

HopelesslydevotedtoGu Sun 25-Sep-16 09:32:16

I'm a doctor and yes, for some reason many doctors 'don't believe' in tongue ties.

I don't know whether they don't believe they exist (because you can see them...) or they don't believe they affect breastfeeding function (how could tethering the tongue not affect at least some movements?). But a large cohort simply deny they can be a problem.

I recognised my own baby's PTT and fortunately in my area we have an NHS clinic which cuts them, although referral is too slow.

I would write to your hospital and HV team explaining that your baby's TT was missed. They need to know that they have a knowledge gap here. If staff aren't experienced in this area they need to be honest with patients and direct them to someone with more knowledge.

I'm really sorry you were let down op. Sadly this is a common scenario.

OhWhatAPalaver Sun 25-Sep-16 11:21:00

Can I just enquire, if your baby is able to stick their tongue right out then are the chances of them having tongue tie very slim?

Tumtitum Sun 25-Sep-16 18:18:32

OhWhat - no. I believe if it's a posterior TT (which my DD had) they can often stick their tongue out quite well, but other less obvious movements can be restricted.

OhWhatAPalaver Tue 27-Sep-16 11:28:20

Buggered, looks like we need to get dd checked then! Thanks x

Cinnamon84 Wed 28-Sep-16 16:13:32

Hi all, my ds had a posterior tt- it was missed in the postnatal ward and also by 2 midwives in the bf clinic. It caused me a lot of pain as he had a shallow latch despite being told the latch was perfect and it would get easier as he mouth gets bigger.
I was convinced it wasn't right as it was so painful and faffed around cup feeding for a week before switching to medela calma bottles for combined feeding. I went to s private lactation consultant in Eton who snipped it in a couple of minutes. I didn't see the difference immediately and was by then using nipple shields- it still hurt using these as he was still chomping with his gums, but now at 6 weeks it's a lot less painful and I can see him using his tongue a lot more.

Feel free to message me if you want to talk in more detail. Hope it improves x

TeamSteady Sat 01-Oct-16 18:42:21

DS3 had a posterior tongue tie division at 11.5 weeks.

I had been told in postnatal that he didn't have a TT. I had fed ds1 and ds2 for two years, i had done the NCT peer support training when ds2 was 6m, (6+ years ago) and at the time it was glossed over- baby wouldn't be able to stick tongue out if it's tied. So i thought i knew what i was doing... truth be told i was actually incredibly embarrassed to be having problems that i couldn't solve.

Well ds3 could just about stick his tongue out but i despite my best efforts i was still finding feeding uncomfortable at best, and as he fell asleep and comfort sucked, downright painful as the latch became shallow. I knew i was ticking the boxes in terms of positioning etc but DS just couldn't open his mouth very wide and nothing i could do seemed to help.

I saw a private IBCLC and tongue tie practitioner who diagnosed the posterior TT straight away.

Unlike a lot of others ( i did a lot of googling mums net searching) baby didn't latch on straight away and it wasn't magically better. The day it was done was a LOT worse before it got better.

He screamed solidly for 20min when it was done, refusing to latch. It was heartbreaking. He had one small feed there with support from the IBCLC-11am. We went home, and every time i tried to latch him he got hysterical. It was heartbreaking. I sobbed my heart out. I thought i had made a mistake, felt so guilty, like i had broken my baby, i should have put up with the pain etc.

I had to use a syringe to get tiny amounts of milk into him during the day, but he was so upset he barely took 1/2oz all day. He finally fed again at 7pm. But i had to walk and rock him at the same time to soothe him as he was so unhappy. For the two days i had to walk and rock him to feed, then slowly so slowly it did start to get better. I would have a feed that didn't hurt, then three that did. It continued to improve until one day i realised that i couldn't remember the last "bad" feed. We're about 5/6 weeks on, and we have no pain on feeding at all. He can open his mouth wide. He has gone up a centile line, and his feeds began to space out (previously he was going 45m-1.5h between feeds, occasionally 2h, now happy to do 3, sometimes 4 if something exciting is distracting him!)

It was horrid at the time but absolutely the right thing to do. There is no way i could have continued to feed him longterm without it.

It hadn't occurred to me to speak to PALS, but actually i think i should and maybe you should too, OP. There needs to be so much more education of HCPS and support available.I asked HV about NHS division, she said in theory yes... but they would have to arrange one appointment for assessment, which would take 2 weeks, and then IF the doctor there felt it would be useful then then MAY refer me for division, which would be at least 2 weeks. I'm very fortunate that we could afford private treatment.

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