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

(55 Posts)
SerialReJoiner Wed 08-Feb-17 13:04:07

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??

reallyreallyreallytired Wed 08-Feb-17 13:06:33

I don't know, I had a very similar experience. It's so frustrating angry

RainyAfternoon Wed 08-Feb-17 13:12:26

You are completely right – it should be. But I have heard that there has been a push to raise awareness of this recently. Certainly it was something that was checked with my third child, but hers was quite obvious. Like you I didn't want to wait to get it seen to on the NHS. Frankly, I wouldn't have been able to cope with the cracked nipples for the four weeks waiting list. We had it done privately (cost us about £100 I think) and it resolved feeding issues almost instantly. I suspect my first child had a less obvious tongue tie which wasn't diagnosed as she had the same feeding issues. It's so common, so easy to rectify, and so linked to problems with breastfeeding, you would think that there would be a lot of emphasis dealing with them quickly. I also became a bit of an expert at the time grin
It seems it's one of those things that maybe comes in and out of awareness – I know in the old days midwives used to keep one fingernail very long so they could snip tongue ties at birth…

cookiefiend Wed 08-Feb-17 13:28:13

I agree it is insane!!! DD2 had her tt noted when she was checked by a doctor before I had even held her. (Not mentioned tonne, but mentioned to DH who had no idea what it meant so didn't bring it up until later). Lost weight so midwife noticed.

I was referred to the breast feeding clinic who referred me into an eight week waiting list- WTAF!!! Meanwhile breast is best and you are failing your child if you don't feed. Luckily we got a cancellation at about six weeks. Until then I expressed and topped her up.

Either the NHS is for bf or it isn't. If it wants mothers to breast feed they need to support it fully. I imagine most people give up when it happens as they have no idea what is wrong. Makes me so mad.

user1471537877 Wed 08-Feb-17 13:31:11

Having been in theatre when a simple tongue tie snip bled, yes you are!

Anaesthetics on tiny babies carry a risk as do not tongue tie snips, it's why I switched my tongue tied baby boy to the bottle

TheLegendOfBeans Wed 08-Feb-17 13:31:25

I was super lucky in that I got her TT snipped when she was 7 days old.

But then it grew back!

It took a further SIX WEEKS to get another appointment by which time I'd resorted to combination feeding and my milk supply just stopped 48hrs later.

I still feel angry about it now - on reflection FF really worked for us but I'm still bitter about the option being de facto taken away from me.

Wishiwasrunning2 Wed 08-Feb-17 13:32:45

It's because lots of consultants (male) don't 'believe' it makes a difference to breastfeeding. As if they've ever breastfed.

I had a similar experience with all three of my children, you have my sympathy as it's heartbreaking to go through all this and get no support from the NHS.

So I trained as a breastfeeding supporter and try to help others who are in the same position.

SolomanDaisy Wed 08-Feb-17 13:32:46

It's ridiculous. I had DS in the UK and it was 'only' a two week wait. I had DD in the Netherlands and it was done within an hour of me saying I thought she had it. It only takes a couple of minutes, so the ENT Dr just fits babies in straight away!

SolomanDaisy Wed 08-Feb-17 13:34:51

user, small babies don't have an anaesthetic for tongue tie snips. Mine barely cried.

TheBogQueen Wed 08-Feb-17 13:37:23

They did dd3 with no anaesthetic and a pair of scissors. Was fine. She cried a little and then fed and fell asleep.

I had to endure two weeks of utter agony trying to feed her before sobbing on midwife and getting referral.

Such a simple thing but apparently some medics regard it as unnecessarily intrusive surgery and recommend bottle feeding - although that doesn't always sort things out either

TheLegendOfBeans Wed 08-Feb-17 13:39:19

Soloman that's why I'm glad that my next baby will be born in NL.

Maternity services best in the world apparently.

QueenOfThorns Wed 08-Feb-17 13:41:18

It's very variable, even within a region. I was lucky enough to give birth in one of the two hospitals in the North West that has midwives who are qualified to do the procedure. One of those took one look at my 1 day old DD, saw the tongue tie and 10 minutes later it was snipped. We were told that if it hadn't been noticed until we were discharged, we would've had to go on a waiting list and it would've been weeks.
It's utterly ridiculous considering the problems that it can cause that they don't have more qualified midwives and that newborns aren't routinely checked for tongue tie. It was so quick to remedy in our case, but would've been so different if we'd been in a different hospital!

madamginger Wed 08-Feb-17 13:43:32

One of my husbands cousins can't stick her tongue out because she was refused a TT snip as a baby because her mum was bottle feeding.

SolomanDaisy Wed 08-Feb-17 13:43:56

legend, I had my DD prematurely a few months ago and the Dutch care was amazing. I think we might not have made it if we'd been elsewhere. Enjoy your kraamzorg too!

SprogletsMum Wed 08-Feb-17 13:44:00

My first dc had a 100% tongue tie, no one would snip it as it was purely cosmetic apparently. My milk completely dried up by 4 months he was losing weight and had to go on bottles. By 2 he still couldn't eat with cutlery and his speech wasn't developing properly because he had no movement in his tongue. I pushed and pushed and finally got the consultant to agree to snip it which obviously had to be done under ga. He had to have it redone at age 4 because it wasn't done properly the first time.
Dc2 and 3 had theirs done at 5 and 3 days because they finally believed tongue ties make a difference to bf. I bf dc2 until she was over 2 and dc3 until she was 15months. I'm pregnant now and will push for this baby to be seen asap too.

Snoopysimaginaryfriend Wed 08-Feb-17 13:44:20

I think tongue tie is genetic in my family. I had it, mum had it, grandma etc I had to have mine snipped under GA in the 80s after not gaining weight. I was only 5lbs13 to start with so my poor mum was distraught when she was told it was a three month wait to be seen.

My dd's tongue tie was diagnosed on the postnatal ward the day after she was born but the midwives said she would be fine because she'd had a dirty nappy so she must be feeding. Of course I know now that was crap. I was told I would need to be referred to a breastfeeding consultant and attend two appointments before they considered any action and that would take at least eight weeks. The community midwife said if we could afford it she'd recommend we go private. DH paid for a private consultation, the tongue was snipped there and then and we had one follow up appointment to make sure we were performing aftercare properly.

GreyBird84 Wed 08-Feb-17 14:41:51

I had a very similar experience. I think it's disgraceful that breast feeding is so pushed & such a simple operation that could enable BF is not a priority.

Apparently it's more common in boys.

ENT rang my house with app when my son was 8 fucking months old?! We went private when he was 10 days old. Expressed for 8 wks until he could latch on.

I'll be more prepared when DC2 arrives in may.

4men1lady Wed 08-Feb-17 15:03:10

My ds had undiagnosed TT, I didn't breastfeed and I don't remember it ever being checked! Fast forward 10 years and his speech has been quite bad, sometimes really hard to understand him.

I'd gone through all the channels as advised..speech and language, having ears checked etc..I got a second opinion and they said they'd do it.

A daycare procedure with GA..god knows how much that must of cost..such a shame because that could of been sorted at birth.

user1471537877 Wed 08-Feb-17 15:03:59

Soloumn Daisy, clearly you're not qualified, I took part in a number of tongue tie ops on babies at a uk paediatric hospital over a 10 year period

And they were all anaesthetised

SerialReJoiner Wed 08-Feb-17 15:06:22

Neither of my babies had anaesthetic. I was told just this morning that it wasn't considered necessary as it is such a small procedure. Or words to that effect.

Clearly this issue is dealt with in wildly different ways across the country. I don't really understand why??

DoWop2 Wed 08-Feb-17 15:07:15

user My son had his revised at St Helier Hospital and he was not anaesthetised. It was carried out by a consultant on the NHS. The variations across NHS trusts are frustrating, we waited 3 weeks which was still too long.

SolomanDaisy Wed 08-Feb-17 15:10:17

I'm not offering to perform the ops myself user, no. But I've had two babies have tongue tie cut in two different countries, no anaesthetic either time. It's only needed for older babies.

StiginaGrump Wed 08-Feb-17 15:11:36

I think you will see struggle to find any babies in the uk who have this under sedation or anaesthetic . Can't imagine where or when you were working?!?

Specialapplek Wed 08-Feb-17 15:12:19

I totally agree that they need to get this in order.

I had such a hard time with DD1 and her tongue tie (only diagnosed much later after so much stress and heartache) that when DD2 was born I had then check her for tongue tie. And even though she was examined by 2 senior midwives who both agreed that she had a tongue tie, they refused to refer me to their tongue tie clinic for it to be snipped. Apparently referrals could only be made by the LC who runs the weekly bfing clinic. And so DD2 was discharged and we could only bring her to the bfing clinic the following week, where the LC confirmed her tongue tie.

Then, she said that I had to come back the following week for a second diagnosis of her tongue tie before she'll refer me to the consultant to get it snipped because 'some babies with tongue ties are still able to feed normally' and she wanted to make sure that the tongue tie was an issue for DD2. I was shocked and could not understand why they kept wanting to delay her treatment and wait for 'evidence' after I've already presented them with all her problems. After much wrangling she agreed to refer me the very same day and DD2 had her tongue snipped 2 days later.

SolomanDaisy Wed 08-Feb-17 15:13:29

Here's the NHS guidance, explaining anaesthetic is not needed for young babies and that tongue tie snipping is safe, just in case anyone was worried.

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