Tongue Tie delayed treatment? share your experiences

(122 Posts)
ChaffinchOfDoom Mon 14-Jul-14 09:19:22

The tongue tie waiting times are very long
according to this

and effectively halt breast feeding for many women
My mum says <anecdotally> that in 'ye olde days' they snipped a tongue tie immediately after birth as a matter of course

so why did that change? With my ds3 I had to wait 6 days and breast feeding was torturous, and only then it was done because I pestered them. Only one MW in my hospital was able to do the procedure.
If it had been done straight after birth it would've been far better for him and me.

anyone else want to share?

comeawaywithme Mon 14-Jul-14 12:50:57

As soon as DS was born I noticed his tongue looked forked. I didn't think to say anything while in hospital (had just had a c-section and DS was severely jaundiced and I was in a bit of shock I think).

Breastfeeding was okay, but got more painful. Once home, I asked the midwife and health visitor about DS's tongue and they said it only looked mild and should not be a problem for breastfeeding. Anyway, it got more and more painful so I contacted someone private who specialises in tongue tie (waiting list too long on NHS) and he had it snipped at 6 weeks. They said it was pretty much a complete tongue tie! Still feeding him at 20 months, but don't think that would be the case if we hadn't had it sorted.

Cousin's DC had it snipped in hospital, but she's a HCP so was maybe more aware. If I have DC2 I know what to look for now and will ask them to do it before leaving hospital (I have also heard it used to be done routinely).

HumphreyCobbler Mon 14-Jul-14 12:53:52

I think most HCPs think that tt rarely impacts on breastfeeding. They must teach them that at GP school.

Of course, I think it OFTEN impacts on breastfeeding but if doctors and midwives really believe it doesn't then attitudes towards quick treatment are not going to change.

They told me that I would have to wait three weeks. I could not have waited three days without stopping breastfeeding. I had it done privately, I was lucky I could afford to.

HumphreyCobbler Mon 14-Jul-14 12:54:41

oh, and no one seems able to diagnose correctly. Certainly PTT goes without notice.

ChaffinchOfDoom Mon 14-Jul-14 15:59:36

there is a bit of confusion.
At my CS the MW who inspected DS3 said straight away looks like a bit of tongue tie, but not a severe one.
The paeds guy who inspected him brushed it off - it's not serious. My Dsis's DS2 had had it the year before though, and I knew exactly it would cause trouble when feeding, so I kept asking for it to be done while I was in
the one MW who could do it was too busy while I was in, we got an apt after discharge with my constant badgering I had him on the weds, he got snipped on the Monday morning after.
When I read some people waiting 84 days - that is insane.
After 12 weeks the dc needs a GA, don't they? it's the kind of simple quick op best done as early as possible for all concerned

ChaffinchOfDoom Mon 14-Jul-14 16:01:09

forgot to add the final opinion - the MW who actually did it said it was a total tongue tie and very severe...

so 3 different HCP had 3 different opinions on one tongue tie. Go figure.

Luckymum87 Mon 14-Jul-14 22:36:54

Midwife who helped deliver my ds said straight away I think he's tongue tied. No matter how many midwives I told this too on the ward they all kept telling me he would feed just keep trying wide open mouth etc. had to give him formula as he was hysterical and blood sugar level falling (I had gestational diabetes) came home aged 3 days he still couldn't Breastfeed so on formula. (Which I really hadn't wanted to do) went to breast feeding clinic at 5 days agreed about tongue tie, gave me nipple shields he could breast feed! I was so pleased! Had to pay privately to have his tongue tie snipped aged 8 days and it took about 3 months to wean him off the nipple shields.

I feel very strongly that if his tongue tie had been snipped in the hospital straight away by midwives trained to detect and do this our experience would have been different. Instead I felt alone and useless in hospital surrounded by breast feeding women and the same at home as I couldn't understand why I just couldn't feed my baby.

We were lucky it was sorted and he took to Breastfeeding my nephew went too long on the bottles and never got the hang of Breastfeeding but my ds and I love Breastfeeding now!

Luckymum87 Mon 14-Jul-14 22:37:40

Oh and ds had a severe tongue tie too

McFox Tue 15-Jul-14 09:24:28

My 5 week old DS had his tie confirmed last week after my nagging the midwives and HV about it and being brushed off. He was referred to surgery, but his appointment is another 5 weeks away!! In the meantime I'm having to mix feed as he gets frantic and is only feeding little and very often from me - every half hour some days. It's exhausting and upsetting.

I'd say lucky you being able to get it don by the mw in your hospital.
we had to drive an hours north to get both my boys tounges divided.
The appointments were pretty quick tho - with DS1 they appoliogised for not being able to get us in that week. It took the NCT lactation specilist to dignose it tho.
Midwife dignosed DS2's after I asked (when he was about 30 mins old, having toes etc checked!)

It would be amazing if we could have mw's on every shift on every labour ward trained to diagnose and divide before discharge.

Sausages123 Tue 15-Jul-14 10:26:41

My first Son TT snipped on day 14 ended up fully formula feeding

Second son 5 days old today is still bf after having TT snipped at 24 hours old

Oblomov Tue 15-Jul-14 10:27:23

I had ds2's snipped twice, after severe nagging. The first time, it wasn't done properly, or so 2nd professional told me.

Frightening. That we are still facing this ignorance and unprofessionalism.

Thumbwitch Tue 15-Jul-14 10:34:55

I was extremely lucky in my UK hospital - DS1 had a mild posterior tongue tie but boy did it affect his latch! The lactation expert came to see me the second day, and she diagnosed it by running her finger under his tongue - it had already been missed by 2 other HCPs. I'd asked for it to be checked for because DH has one and there is an inheritable link.

So, because it was mild she said she could refer straight away or I could give it a couple of days to see how her feeding techniques worked out.

Luckily for me, MW who came to see me was also a bf'ing expert - she listened to the tongue-clicking and the length of time it was taking for DS1 to feed (up to 2h), and she made the referral for me.

Within 2 weeks, I saw a paediatrician about it - he said it was mild, but he'd known mild tongue ties really affect feeding, and snipping helped; he'd also seen really severe tongue ties snipped and it had no effect on feeding, so he gave me the choice. I said "Do it" because I wanted to give DS1 the best chance (TT can also have effects on dental health and speech). It made the world of difference!

I was also asked to fill in a feedback form re. the outcome of the tonguetie snip - which I happily did - because the paed in question was doing some kind of survey on the effects of having it snipped compared to severity of tongue tie. I wish I could remember his name so I could see if he'd published anything!

In Australia, I pushed to have DS2's tongue tie snipped before we were discharged from hospital, but it just didn't happen. sad
It took 5 weeks to see the paed, and we were lucky we got one who knew what he was talking about, as opposed to the idiot who told my friend that "all babies have a squareish tongue, tongue tie isn't relevant to your baby's reflux, and is just a "buzzword" at the moment" and made her take her baby off BM and go onto thickened formula instead. sad

Paed snipped DS2's TT, his feeding improved but not as quickly as Ds1's, because he'd had longer to get into bad latch habits (5 weeks as opposed to 2) - but still made a massive difference.

I passionately believe that tongue tie should be routinely checked for at birth, same as hip dysplasia, hearing and sight checks. And, if found, it should bloody well be dealt with - the health services are apparently keen to get breastfeeding rates up, so why the actual fuck won't they take this very easy, very cheap and extremely simple step to make feeding easier?
Feeding a tonguetied baby can be excruciating - for me it was like having razor blades sucked through my nipples - and it's only because I had the tongueties dealt with that I managed to carry on bf'ing as long as I did.
I'm also extremely irritated that many hospitals in the UK won't do it routinely, but insist on charging £100+ to have it done privately in specialist units - again, I can't believe how lucky I was to have a sane team in the hospital I had DS1 in!

scallopsrgreat Tue 15-Jul-14 10:49:27

My DS2 had posterior tongue tie that was missed by 4 HCPs. It wasn't until (by chance and after much banging on tables insisting that something was very wrong) I got sent to the tongue-tie clinic at my local hospital that is was diagnosed and snipped there and then. I had been in agony for 12 days and had tried using nipple shields which ended up in nipple confusion for DS2 and a whole nightmare getting him back on to the breast again.

The tongue-tie clinic I went to isn't even listed on the Baby Friendly Initiative. It was only because my HV knew the midwife who did it that I even got referred.

The midwife told me that they estimate that 40,000 women in Bristol stop breastfeeding because of undiagnosed tongue-tie. It's a massive problem.

MaximoosesMum Tue 15-Jul-14 11:36:11

My sons tongue-tie was missed until he was 3 weeks old.
He had a severe posterior tongue-tie.
Numerous midwives, lactation consultants and a pediatrician had looked in his mouth to check if he had TT, all said he didn't.
At 4 weeks my ds had it snipped, but by then I was mostly feeding him expressed milk and formula by bottle. He still wouldn't latch as he was too used to bottles, dummy's and nipple shields.
My son is now 19mo, and I believe it has grown back or was never done properly in the first place, I have never seen him stick his tongue out and worry it might effect his speech.

dodi1978 Tue 15-Jul-14 11:36:41

Tongue tie on my sliglty early DS (born at 36 weeks) was ony diagnosed a week later, despite a few midwives visiting us at home. We had to go back to hospital at this point due to severe jaundice. That evening, I was told that the specialist midwive cutting tongue ties was not available at the moment.
I spent that night researching private options or the possibility of going to another maternity hospital nearby on my mobile phone (it was a tired and emotional night as I had to pump every few hours and DS was taken into special care for a few hours for stronger blue lights).
Next morning, the midwife who I'd seen at anenatal clinics (and who had sent us back to hopsital the day before) saw me and said she would "have a word". Miraculously, the tongue tie was snapped not two hours later by another midwife. Whilst I am glad that happened (I'd have happily shelled out 150 pounds for private treatment and would have been in a position to afford it), I am really angry about having to spend the night worrying.

TremoloGreen Tue 15-Jul-14 11:41:48

I think that most HCPs don't know how to diagnose tongue tie. They would probably pick up an obvious anterior heart-shaped tie, but then so would I! I had three midwives, a paediatrician, two health visitors and a GP tell me that my baby wasn't tongue-tied. (They also told me that it was normal for breastfeeding to hurt and normal to have bleeding, cracked nipples angry). None of them did more than a cursory glance in her mouth to decide. When I finally found a certified lactation consultant, she did a much more in-depth assessment, including touching DD's mouth to see how far she could move her tongue. The tongue tie was cut, her 'colic' disappeared overnight and feeding was pain free a few weeks later. We're still breastfeeding at 14 months.

I strongly believe that midwives should be trained to spot tongue tie and remedy it at birth - this is what used to happen. I know so many women who thought they couldn't breastfeed because of pain, because of poor supply/ baby not gaining weight, I am willing to believe that many of these cases are due to tongue tie. The rest probably poor education about what normal breastfeeding is like (cluster feeding, growth spurts, anyone?!) It makes me very angry that these things would be so easy and inexpensive to remedy. I was almost pushed into PND by the pain and guilt I was feeling, I thought I would have to give up breastfeeding and I can only describe it as grief for that relationship. I was lucky that I could pay privately to see a IBCLC and get the procedure done.

AtYourCervix Tue 15-Jul-14 11:45:08

Stupic internal NHS politics. ENT consultants don't want midwives (who are trained) to run clinics or give TT advice. Means that midwives have to do a formal referral. Women have to wait weeks to be seen. Breastfeeding already fucked by the time babies get reviewed. angry

FavaBeanPyramidScheme Tue 15-Jul-14 11:52:55

I waited for the most excruciating 2 weeks of my life. Next time I'll be checking DC for any TT on day 1.

GwenStacy Tue 15-Jul-14 11:57:26

I had to fight to get my daughter's done - paediatrician and GP both said it was minor. I managed to breastfeed with the help of some amazing midwives and she finally had it done at just shy of four months. The surgeon we saw was amazed I'd managed to BF her and I felt the difference immediately once it was done.

It wasn't done with any anaesthetic - they swaddled her tightly, snipped it, unwrapped her and gave her to me. She latched on immediately and was smiling at the surgeon within a few minutes.

FavaBeanPyramidScheme Tue 15-Jul-14 12:01:34

Incidentally, mine was:

1 missed by a midwife
2 identified by another midwife and referred to a midwife led feeding clinic
3 delayed by a midwife at the clinic who said that tongue tie revisions are a bit fashionable at the moment and not necessarily needed
4 immediately referred for revision by another midwife at the clinic a week later and
5 revised the next day by a midwife,

not a whiff of a doctor throughout!

ChaffinchOfDoom Tue 15-Jul-14 12:02:07

thanks for your stories people
this is shocking - and agree those who said it is a cheap and simple remedy for those in awful pain -
could save money for NHS later on via speech therapists too

I BF my 1st 2 dc and neither was TT, with DS3 the pain was very bad for the 4 days until he got done, and all of the HCP kept asking are you sure you want it done? it's up to you?
Yes I bloody wanted it done before my nipples spontaneously combusted thank you very much
they did make me doubt myself - I remember saying to dh we do want it done, don't we? they make you feel like a bf failure in that vulnerable time after you've given birth
sorry if disjointed am sleep deprived from my 3mth old grin

ChaffinchOfDoom Tue 15-Jul-14 12:08:15

from the NHS site

Tongue-tie division
Tongue-tie division involves cutting the short, tight piece of skin that connects the underside of the tongue to the floor of the mouth. It is a simple and painless procedure that usually resolves feeding problems straight away.

The National Institute for Health and Clinical Excellence (NICE) supports the use of tongue-tie division, as it is safe and there is evidence that it can improve breastfeeding. See the NICE guidelines on Division of tongue-tie for breastfeeding.

The Baby Friendly Initiative provides a list of hospitals where tongue-tie division can be carried out.

How tongue-tie division is carried out
In babies only a few months old, division of tongue-tie is usually performed without any anaesthetic (painkilling medication), or with a local anaesthetic that numbs the tongue.

A general anaesthetic is usually needed for older babies with teeth, which means they'll be asleep during the procedure.

The baby’s head is held securely, while sharp, sterile scissors are used to snip the tongue-tie. This only takes a few seconds. You can start feeding your baby immediately afterwards.

Some babies sleep through it, while others cry for a few seconds. In small babies, being cuddled and fed are more important than painkillers.

There should be little blood loss, though some bleeding is likely.

A white patch may form under the tongue, which takes 24-48 hours to heal but does not bother the baby.

ChaffinchOfDoom Tue 15-Jul-14 12:10:31

Not many hospitals offer the service probably explaining why is so bizarrely diagnosed/misdiagnosed

ChaffinchOfDoom Tue 15-Jul-14 12:12:52

yet it affects between 3-10% of babies

10% !!!!! how that must affect the breast feeding take up rates

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