Tongue Tie delayed treatment? share your experiences

[ChaffinchOfDoom]

The tongue tie waiting times are very long
according to this

and effectively halt breast feeding for many women
My mum says 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?

[TremoloGreen]

delayed by a midwife at the clinic who said that tongue tie revisions are a bit fashionable at the moment and not necessarily needed

I think this is a fairly prevalent attitude, I hear a lot of women in my LLL group come up against it. Whatever evidence they are basing this on (if indeed they are doing so) will obviously be inaccurate due to the massive under-diagnosis of tongue tie!

[Thumbwitch]

Oh that list is brilliant! Seems to have given me the name of the paed I saw, the one with the interest in tongue ties. How lucky I was to be at that hospital!

In both cases, in both countries, DSs were given some sucrose solution, then swaddled tightly and held by a nurse while the paed did the snip - I was in the room but not looking! - but the difference was in the UK, they did put a tiny drop of novocaine (dental anaesthetic) under his tongue after the sucrose solution was given. In both cases, they didn't even whimper, and I was allowed to feed again straight away. DS2 bled for a bit longer than DS1 did, but only about 5 mins and we had no problems afterwards from the snip.

[Wibblypiglikesbananas]

I am British but live in the US. I had DD in the UK, no tongue tie, and DS here and he does have a tongue tie. Tongue ties are routinely checked for here and parents choose whether to have the snip done or not. You don't wait - a few days at most. DS had a mild version (or it hadn't affected BF and wasn't picked up until the paediatrician check on day 2). I'm still feeding him now at 9 months without intervention. I don't know if having fed one baby already helped or whether DS's case really was very mild. Having read lots on here about TTs, I was keen to get it snipped but even though the option was there, our paediatrician advised against it as feeding was going well. The leader of the La Leche League group l go to said TTs are often over diagnosed! I have to say that her saying that surprised me!
In terms of TTs being hereditary, my DF had some procedure when he was a baby to cut the tie and I also have a tongue that I can't stick out very far, which I suspect is tied but haven't had formally diagnosed. I was BF and it hasn't affected anything else.

[Ivytheterrible]

I was very lucky that they were trialing a new cutting service in my area so the tie was identified straight after birth by the homebirth midwife and I went along to a feeding clinic at the hospital 4 days later who snipped it on the spot. All feeding problems were resolved and I went on to breastfeeding for 6 months.

[Ivytheterrible]

Forgot to add that a friend who had a baby 6 months before me also had a tongue tie. They had to go through a gp referral route and it took 8 weeks to get cut in the same area. I did a feedback thing on the new service praising the service and saying how important it was.

[catdoctor]

Very similar experience here -DS2 had what looked like a bleeding obvious tt to me at birth but I was told all was well by my over seeing midwife and the paed reg despite me asking them specifically to look.
Luckily my local midwife saw it straight off at the first home visit. The GP referred me to a paed (rather than a midwife) waiting list 6 weeks, so we had it snipped by private midwife at 8 days old.
This has made me so mad - it's insane.
As Thumbwitch says - it should be a routine check. Treatment is simple, generally very well tolerated and generally side effect free - it should be done immediately as prophylaxis IMO, if that's what informed parents want.
As other posters have said, here is a significant reason why breast feeding becomes an issue for many people, that's being under played. I think maybe it's a hangover from days of more formula feeding as I think it makes less difference then ( though can still be a problem) and so it's fallen off the HCPs radar IYSWIM

[KatharineClover]

I asked the paed to check for tt when my son was 1 day old (my dad has it), she checked he sucked her finger, he was crying and had his tongue down, she didn't look under & said 'I think he's fine'. I'd had a traumatic birth and I took this as gospel and told all HCPs he'd been checked for tt and was fine. My milk didn't come in properly as I'd had a PPH but at 17 days with loads of bf problems (BF feeds taking 2hrs with top up bottle, clicking, nipple pain, bottle milk pouring out his mouth, colic, not sleeping, weight loss, appalling advice from mws) I saw an nct bf counsellor who diagnosed him straight away. Mw referred us and after 2 more weeks he had the snip at ENT clinic (thumbwitch we were also part of a study and had a telephone interview with the consultant a few weeks later). Afterwards I had no pain feeding, although I had long lasting supply issues that even with SNS, fenugreek, pumping etc I was never able to conquer: we combi fed for 20 weeks. It is still a source of pain for me that his obvious tie was not picked up, and a lot of pain and anguish for us both could have been avoided.
Currently expecting DS2 in 8 weeks - I have the £80-120 put aside for a private tt snip if needed for him, as those first few weeks with DS1 (especially the wait from diagnosis to snip) were so painful and traumatic, I don't want to go through that again. Also the system has changed now here so that if tt is suspected a mw can't refer you for a snip, a gp or dr has to, and they have a longer waiting list and are snipping less ties :(

[GhoulWithADragonTattoo]

My DS's tongue tie was missed in the hospital where he was born. First time my regular midwife saw him, at a week old, she spotted it immediately. She said she couldn't refer to tongue tie clinic but that lactation consultant could. So the next day I went to breastfeeding clinic. She referred my son to King's College Hospital (not my usual hospital but a short train journey from here).

I had a call from King's within a day or two to say I could take DS to the next clinic which was the following Tuesday. The clinic was full of babies with tongue ties and was fraught, especially as the babies hadn't been fed for a couple of hours when it started. However, the registrar we saw was very professional and the procedure for DS was very quick. He was upset initially but settled to feed immediately and calmed down quickly.

There was another lactation consultant available to give advice on breastfeeding afterwards. My DS is my second and I fed my DD with no problems for 15 months so I knew that it was the tongue tie that was making things more difficult. Feeding did improve a lot afterwards.

My DS was 15 days old when he had the procedure. This was fine as I was able to feed him albeit with some discomfort. 15 days is a long time to wait if baby cannot latch on at all or mother is in a lot of pain though. I think I would prefer tongues to be checked and snipped immediately in hospital.

[CityDweller]

Another one whose DC's TT was missed by countless NHS people, despite me having continued bf problems. Because DC continued to gain weight, the NHS thought it wasn't an issue - even though my nipples were in shreds, bf was very painful, DC was incredibly fussy at the breast and I had repeated mastitis.

GP refused my request for a referral to the local hospital TT clinic, so I ended up going private. DC had a significant anterior and posterior tie and the private clinic snipped it straight away. DC was 5 weeks old by this point.

We had to have it snipped a couple more times as DC is a 'super healer'! But the happy outcome is that DC was exclusively bf and we're still bf at 15 months.

[MrsMarigold]

My DD had one and I suspect my DS did too but it remained undiagnosed and breastfeeding was tough. With DD we were walking through the hospital on our way out when a random doctor saw her he screaming he said "That child has a tongue tie, someone get it fixed." She was referred instantly. The procedure was a few seconds. Her tongue went from heart shaped to normal fairly quickly.

[McFox]

I've just spoken to the receptionist at the local paediatric surgery unit to try to get my son's appointment brought forward - it's 5 weeks away and I don't think that we can/should have to wait that long. She told me that clinics have been dropped from weekly to every 3/4 weeks because if a shortage of registrars and the 2 they do have are on holiday for the next few weeks, so basically there's no option to get him seen sooner. So in the meantime we have to just struggle along and try not to cave in to ff. I'm not impressed.

[silversixpence]

I had a horrible time with tongue tie, thanks to Mumsnet I was able to get it diagnosed, the NHS breastfeeding counsellor would not refer me for at least a week during which I was supposed to try techniques I had already used and it would have been a further week or two before it was snipped. My nipples were bleeding with every feed and I was in agony. I was able to get an appointment the next day with Ann Dobbs and had the tongue tie snipped and am still breastfeeding nearly 18 months later!

I was really disappointed in the NHS, I work for the NHS and at the time I needed help they were useless.

[KatharineClover]

It is wrong that there is not an uniform approach to treating tt :(

www.analyticalarmadillo.co.uk/2014/07/dear-paediatric-consultant.html an interesting article/open letter from the analytical armadillo about feeding problems including tt

I remember signing an online petition about 2 years about about training mws to diagnose and treat tt.

My dad's tt was snipped by the midwife on her home visit in the 1940s.

[RumAppleGinger]

I definitely feel that the delay in getting DS's TT sorted was one of the elements that hindered my attempts at breastfeeding. TT was noticed pretty early on but we were kept in hospital for four nights for various other reasons. Once released we were referred to a local dental practice when DS was six days old who snipped it and sorted it out. I think if it could have been dealt with on the ward (we were there for long enough!) my attempts at breastfeeding would have been a lot more successful.

[Kaekae]

My DP has a very minor TT and so do/did both of my children but both times I was told my babies didn't! I didn't have my sons cut as it was very minor but I did with my daughter. I struggled to breastfeed for five weeks, I was told time over that my DD didn't have a tongue tie and I got into such as state that I ended up with a very sever case of mastitis. I phoned helplines, went to my GP, health visitor but received no help. Finally, I came across a leaflet for a breast feeding clinic and went along. They took one look at my red chest and neck and said " let me check inside your babies mouth" a tongue tie was detected straight away. I was very engorged with milk and the advisor helped me to release some of the milk and refereed us straight to a clinic so that DD could have her tie cut.

I felt like such a huge weight had been lifted. We waited a while for the appointment and because of this I just couldn't go on feeding, I was in agony and also had a 20 month month old to look after. It was such a shame to have to give up, I really wanted to successfully breastfeed but the pain was making me so unhappy.

[Sparklypants]

My DS (2.11) has only just, (2weeks ago) had the small op under general anaesthetic for tongue tie!

He breast fed fine, or so I thought...he was a bit of a grazer, on and off the boob constantly. I now think this was due to his tongue making it uncomfortable for him.
It wasn't picked up on, I think, because he was very poorly (in and out of hosp for the first 1 1/2 of his life, nearly lost him a few times) that no one was looking at that.

I noticed his tongue was forked and he couldn't stick it out at about 1. We went to docs, we were referred to the hosp, the doc at the hosp told me point blank that now he was older and would require a general anaesthetic it was to costly for the hosp and instead he would be offered speech therapy when he was school age!! That really wasn't good enough!

It's taken me all this time, nearly 2 years to get a consultant to agree with me that it needed to be done. His speech has been delayed but it's already getting better thank goodness.

[Gamonsharon]

Hi everyone. My name is Sharon and I'm a Neighbourhood Midwife. I just wanted to let you know that there is no waiting time for a tongue tie division with Neighbourhood Midwives. We have several practitioners who do the divisions and will come to your home and do it. If you would like to find out more please go to our website //www.neighbourhoodmidwives.org.uk or visit //www.hampshirehomebirths.co.uk.

[minipie]

My DD's posterior TT was finally diagnosed and snipped after 16 weeks.

She was prem and spent 3 weeks in hospital. Oddly despite her being surrounded by doctors and nurses, nobody checked in her mouth during that time (even though everyone was puzzled as to why she wasn't learning to latch). The hospital BF counsellor watched me attempt to feed, said all was fine, said nothing about TT. A nurse told me she couldn't have TT as she could stick her tongue out .

She eventually learned to latch after a fashion, but feeding continued to be very difficult. She fell asleep after a few sucks, found feeding very tiring, swallowed loads of air, fell off the nipple constantly. She was a very windy, refluxy and pretty miserable baby and slept appallingly until the TT was snipped.

Supply was good however as I'd been on the hospital pumps. Weight gain was ok too due to good supply and massive effort to get the milk down her however I could (but her weight rocketed after the TT was snipped). Pain was intermittent - cracked nipples and pain during growth spurts but otherwise ok.

Next baby will be checked and snipped as soon as I can get a LC round to the house. Thank god we can afford to go private. NHS knowledge about TT is appallingly patchy. Surely if they want to encourage BFing they should divert some resource to this?

[vintagenurse]

I work in health visiting and the wait to get a tongue tie divided is about 10 weeks here, yes, 10 weeks!! A lot of the time I make the referral when I do the new birth visit, because no one else has noticed it before hand! There is a private midwife locally that will do it, but the area I work in, most people cannot afford the cost.

[BeaglesOfDeathMetal]

DS2 had a tongue tie, which wasn't spotted in hospital and after successfully BFing DS1 I was really confused as to what I was doing wrong.

When the home visiting MW finally diagnosed him it transpired that the only person in my district who could snip it was on jury service and referral to another district would take a fortnight or more. I was in agony by that point and DS2 was FF from two weeks old.

[PsammeadPaintedTheLion]

Dd 2 had hers snipped on day three (a day after we noticed it) and it made breastfeeding possible.

After her first night at home, she sicked up blood a couple of times due to swallowing it from my bleeding nipples due to the tie. We woud not have been able to carry on like that.

[Thumbwitch]

All these stories of extended waits, expensive treatment etc. make me so cross! It's a 10 minute appt MAX, it's a piece of piss to do, it saves so much trouble, and it helps women to breastfeed who might otherwise have to give up.

I just CANNOT see any argument against having it done, unless the lack of willingness is backed by the formula companies - but how would they have that power? It's in the NICE guidelines to do it, so why are so many hospitals refusing to follow guidelines?

I'm sure I saw somewhere a figure of 10% of babies have some level of tonguetie (but that would only be the diagnosed ones, and that would only be the ones who were failing at bf'ing or checked at birth I suppose! so it could be higher) - this is not a trivial number! So I can't for the life of me see why people are removing clinics for this, reducing training, refusing to have it as a procedure - it's crazy!

[kikidee]

My DD had hers snipped at between day 7-10 ish I think. The breast feeding support midwife diagnosed it (I was very sore with feeding and DD not putting on much weight). They took her away from me to have it snipped by the consultant and she was brought back to me wailing and bleeding a bit. I gave her a feed straight away to calm her down and ultimately we successfully fed until she was 18 months. I was unable to feed my DS and wonder now if he had a tongue tie too which was undiagnosed.

[ChaffinchOfDoom]

it is crazy
come on mumsnet we need help here, this is awful
so much unnecessary suffering. so easily fixed.