To feel utterly frustrated with the NHS and tongue tie treatment...

[SerialReJoiner]

When I had DD 3 years ago, we lived in the Midlands. She was diagnosed with posterior tongue tie at 4 weeks, but we were told that (a) the waiting list for revision was 8-12 weeks and (b) they wouldn't do her tongue anyway, because it was a posterior tongue tie so not a priority.

Never mind then, that she was constantly losing weight, that I was constantly sore, and that my milk supply was waning because she couldn't remove the milk effectively so it was a clear message to my breasts to slow down production.

We had the money to get the procedure done privately, but that isn't an option for many people. I still had to express milk and top her up for another 5 weeks before she was able to drink from the breast exclusively. It was a stressful time, and that was with all the support in the world from my dh, family and friends, plus top-notch advice from a local LLL leader who was happy to talk to me as I blubbed down the phone at her.

Fast forward to now, and DS is 5 weeks old. As soon as he was born I checked his mouth, and lo and behold he has posterior tongue tie as well. We are now living in the North West, and I accessed One to One Midwives for my pregnancy and birth. They put my name down for revision within their unit, and I happily only had to wait 2 weeks.

Today I took DS in for the procedure, and had a long chat with the midwife who explained how even though his posterior tongue tie didn't look "bad" from the outside, when she examined him it was clear that he didn't have full range of movement with his tongue and no wonder he has been so slow to gain. I've had to manage his feeds with breast compressions and topping up ebm as well, though it hasn't been as drastic as with DD because I caught it so early. (and yes, I had to diagnose him....)

I am frustrated with the lack of consistency across the NHS when it comes to TT treatment. If the NHS feels that "breast is best", why aren't they supporting TT revision then? And this isn't just about breastfeeding - my babies coughed, spluttered and choked at the bottle as well. TT can impact the ability to eat solid foods and cause speech impediments. It can cause dental issues.

Yes, the NHS is stretched, but a little snip at the beginning of a child's life can actually save ££ over the next decade or so.

I've learned a lot about tongue tie over the past few years, but I'm not a trained professional and don't know the inner workings of the NHS. Maybe I don't see all the nuances with this issue - but I'm still frustrated and feel like our situation is okay more due to luck and my bull-headed stubborn streak than anything else. There should be more support! Babies need tongue mobility to feed! Why isn't this a priority??

[CaveMums]

Oh and no anaesthetic, just a really quick snip with scissors

[mumofmunchkin]

I agree.

DS2 was checked by the midwife within half an hour of being born, announced no tongue tie. By day 2 it was really obvious there was a tongue tie. Took him to the feeding clinic at the local hospital that day who agreed but apologised that their tongue tie specialist wasn't there that day. A couple of days later (day 5 I think) I went to the feeding clinic at the other main hospital in our city as I'd been advised by the first clinic, saw the tongue tie specialist who snipped the tie on the spot (no anaesthetic) - almost no blood, latched on straight away and we've never looked back. There was a cue of people there to have ties snipped that day, being seen one after the other.

My sister in law, in a different county, spotted her son's tongue tie before they left the hospital, had to nag and nag for a referral, and finally got the tie cut nine weeks later.

Ridiculous mixture of experiences!

[mumofmunchkin]

Queue, not cue, obviously!

[Belle1409]

My DS' tongue tie was diagnosed immediately at birth by the midwife however I was in theatre and had been in labour for 3 days it went completely over my head. It wasn't checked at his newborn check and when I mentioned it to the two midwives who saw me at home they weren't interested as he was gaining weight and didn't even look in his mouth. They said I had to go to the doctor and get a referral or go private.

I asked the HV about it and she was the first person to check his mouth since he was born and she said she could see it so would refer us to one of their clinics. The referral came through when my DS was 4 weeks old.

Even at the clinic they were quite dismissive of me as he was 4 weeks old, gaining weight and yes I found bf slightly painful but as a first time mum I thought it was supposed to hurt. They looked in his mouth and found he had 100% tt, both anterior and posterior and were shocked he had been able to feed at all. I am so glad I went along to the clinic as who knows what implications this may have had for him as he got older.
I really think this should be a standard check included in the newborn check that is done on babies. It was a 5 min procedure for my little one.

[EveOnline2016]

ankyloglossia Surgery is very minor.

Numbing cream or injection are used and then a clamp like scissors are used to crush any blood vessels for about 10 minutes, then using scissors the doctor snips the tie.

I think MW should be trained and be able to preform this before baby is discharged from hospital. For home births then that's for waiting lists.

[TronaldDump]

It's ridiculous and so easy to fix.

user both my DC had tongue tie snipped and had no anaesthetic either - I believe they anaesthetise older children but it's very straightforward with small babies. Mine both cried for a minute or so but seemed to have no problems or pain after and managed to actually feed happily after a really rough start!

[Splodgeinc]

The doctors that do the baby checks aren't trained to spot them properly and then the service is one is noticed to get them cut on the NHS is rubbish, the wait is too long so BF ends up stopping before is started. IMHO its a perfect example of the stupid goverment policy on BF. All HCPs go on about (and TBF its all they're taught about) is that breast is best and thats what is spouted at mothers yet we have the worst BF rates in the western world - why? its not because mothers don't want to BF its because there is no bloody support.

[EveOnline2016]

GA is rather risky in newborns.

The cannula its self is tricky to place as the veins are so fine and can collapse very easy.

[Splodgeinc]

*service ONCE one

[EdenX]

Eve both my children's were done at 3 weeks with no numbing cream, injection or clamps - just a bloke with a pair of scissors, took 30 seconds.

[Youremywifenow]

Same experience here. I've posted this before but TT diagnosed at birth, it was so obvious as his tongue was heart shaped. He still has speech problems.
I'm in Manchester, they said the nearest place that did it was in Preston and there was a wait.
I found a private surgeon to do it (£160) but by that stage it was too late, DS was too used to bottles and despite expressing, my milk supply went.
The surgeon's office was on the same corridor as the post natal ward I was on. I still can't believe that none of the midwives / consultants I saw during the week I was in hospital knew he was there (using NHS admin and clinic time to do his private appointments). I could have had it done before we left hospital. I was there for a week.
No anaesthetic, just a spoon with a slit to lift up the tongue and was snipped with scissors.

This is such an obvious reason why some people can't breastfeed. They didn't mention TT in the breastfeeding ante-natal class I went to (same hospital), just gave us post-it notes and told us to write down reasons why people might not want to breastfeed - no acknowledgement that some babies really can't.

This needs to be a training issue so midwives can diagnose and treat it if they want breastfeeding rates to go up. Found out later that my friend's baby had TT and was treated before they left hospital in the same NHS trust. There is no consistency and clearly no policy on how to deal with it.
I'm still furious about the whole thing 5 years later.

[Splodgeinc]

EveOnline2016 newborns dont need a GA for a tounge tie snip, my DDs was done in an office in 5 mins

[SerialReJoiner]

Your that is awful. So many stories in this thread, and I'm sure many more all over the country. What's even worse is the TT babies who have never been diagnosed, and mothers blaming themselves for "failing" to bf.

[ProfYaffle]

Friends of ours had a baby a few weeks ago and had a similar experience. They ended up paying for it privately - was snipped on the ward with no anaesthetic. Took seconds apparently.

[FlaviaAlbia]

Yes, my HV swore blind that DS didn't have a tongue tie and my midwives had no idea why he wasn't able to feed.
A LLL consultant diagnosed it as soon as she looked into his mouth.

To be fair, the NHS appointment was the week I got referred, but it took 6 weeks to get to that point. Like others have said, no theatre or big operation, just the ENT clinic and a doctor with scissors, it was done in about 5 minutes.

[EveOnline2016]

Splodgeinc I know. Just referring to the poster who said GA.

[BearFoxBear]

It's so frustrating. I pointed out with a week that ds had a tie and it took until he was 12 weeks old to get it fixed. Apparently there were only 2 consultants in Scotland dealing with tt - one in Edinburgh, the other in Glasgow. Unbelievable.

[minipie]

YANBU at all

There was a thread on here a couple of years ago entitled something like "Sign here if you were told your baby didn't have tongue tie, only to find out they did". Shed loads of people who were told this (incl me).

And then there's all the ones who were never told about tongue tie at all.

Paying to go private is unfortunately the only reliable and quick option for TT division, and that is (a) incredibly unfair and regressive (b) counter to all the NHS's supposed efforts to get more women from deprived backgrounds breastfeeding and (c) opens it up to becoming a dangerous unregulated procedure with charlatans around.

It makes me furious. It's such a simple and quick thing if caught quickly and can cause such pain, frustration and guilt if not.

[d270r0]

It is dreadful, although it sounds like I had a better experience of it than you. Both my ds's had tongue ties. Ds1 had one that was severe, I was breastfeeding, but he tongue tie was to such an extent that he could not get any milk from me. I stayed in hospital for ages ( also c section) and he cried allthe time he wasn't comfort sucking, and they didn't spot it until he was 4 days old, despite the fact he cried all he time and lost masses of weight. I kept him comfort sucking but switched to formula as well and they cut it on his 9th day, then lots of hard work with pumping to get back to just breastfeeding.
With ds2 I too, checked at birth, he had one as well, and they cut it in hospital on day 3. Much better- they said they had to wait until then as they wouldn't do it straight away. He only needed a few top up formula feeds in that time.

[BreezyThursday]

DC diagnosed by community bf worker after a couple of weeks and was snipped about a week later during an evening surgery.
Doctor asked later for feedback on how we thought it affected feeding (positively) and our thoughts on anaesthetic (happy with none) so I assumed there is still a lot of data being collected/research being done. A couple of friends in same area took much longer to be picked up.

[Diamondsandpears]

So many similar stories. Bloody sad how many families could be helped but aren't!

[Batteriesallgone]

I don't understand all the talk of anaesthetic and clamps and such

I've had two babies had their tt snipped and know friends and families who've had the procedure done on their babies. None have had anaesthetic or anything other than a quick snip of the scissors - apart from the family member who formula fed so they wouldn't snip her boys tts when tiny. Affected their speech and eating so they (four boys, all went the same way) had them separated at 4 years old under ga.

In a baby its head dropped down, something in the mouth to keep it open, quick snip with the scissors. Then I was asked to feed straight away as it helps stop the bleeding apparently.

I think it's bloody shocking it's not done either at birth or on one of the midwife follow up appointments in the first week (or in hospital if you're kept in). So much energy seems to go in to denying its ever an issue / only an issue in rare cases. Why?! Why aren't women just believed ffs.

[Diamondsandpears]

www.tongue-tie.org.uk/tongue-tie-practitioners-nhs.html

[Coastalcommand]

We were given the option of an 8 week wait on the NHS or same day by going privately. We felt we had no choice but to pay. She's now EBF. It's outrageous that poorer families can't get the help they need to breastfeed too.

[Diamondsandpears]

Completely agree Coastalcommand my area have nobody trained in diagnosis "because it wouldn'the be worth the cost of training as it is so rare" Just because you are not looking for or treating tt does not mean that it doesn't exist or need treated!!