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?

[Thumbwitch]

New Mumsnet campaign? should be, eh.

[anotherbitofcake]

Rubbish experience
Got noticed at birth by midwife. Decided not to cut as baby fed ok. Roll forward a few weeks. He's losing weight and screaming at boob and bit latching. Paid to see bf lady who said severe and get it done.
Went back to hospital. Got it done. No improvement. Went back to bf lady desperate. She showed me hospital had done bugger all. Tt still there. Got referred to her nhs hospital. Got it done properly at around 3.5 months. Awful short term - baby screams, covered in blood, have to massage wound which is really stressful but by god it helped. He started feeding properly after a couple weeks and is much much happier. Am pretty pissed off by experience though. I was so close to giving up bf. No idea why they didn't cut it straight away. I guess at least first midwife spotted it which is better than other experiences I've heard of.

[KatharineClover]

Excellent idea! Please help mumsnet.
My weeks feeding with tt were some of my darkest days, and I believe were the cause of my PND, it is insane that something so easily treated is being missed, dismissed or delayed.

[ChaffinchOfDoom]

so it causes

with mother
pain
misery
suffering
nipple damage
anxiety
mastitis
giving up BF

and with baby
pain
misery
suffering
loss weight
wind/reflux
future feeding issues
future speech issues

which can be solved in 10minutes or less

[Thumbwitch]

You missed:
future dental issues - the loss of tongue movement means that they can't use their tongue to "clean" around the teeth, so they're at higher risk of dental caries too.
Nice.

[ChaffinchOfDoom]

all it needs is MW to learn to do it as part of their training?
so it is done as part of the basic checks after every birth, after the vit K injection for example

[Laquila]

We had horrendous problems with bf pretty much from the start, and tt was missed by various HCPs.

Eventually a bf support worker spotted it and made me an appt with her to get it snipped, then called me the next day to say she couldn't do it as agreed only just noticed that I was under a different PCT (despite living only a few miles from her bf cafe and clinic).

I had to self-refer, via a form from my HV, to our "local" tt services at a hospital a good 20 miles away. When I was told the wait was 6 weeks (my boy was about 5 wks old by this point and I was in excruciating pain every time I bf), I complained to my GP, who assured me she could book it in herself very quickly and it'd all be very simple. She was surprised to find that her computer system wouldn't let her refer me to a paediatric surgeon - I don't think she'd ever dealt with a tt baby before and was naively expecting that there would be good procedures in place for a quick solution.

After constantly chasing up on my self-referral request at the hospital, they eventually (unexpectedly) gave me an appt for a week and a half later, and my boy had it done at about 9 weeks.

Whilst I can't say that it was an instant miracle cure, things definitely improved for us from then onwards and we're still feeding now, at 10.5 months.

[ChaffinchOfDoom]

this is quite a scary hole in the nhs no?

all of this petty referrals to diff pct's...different hcps different opinions...

[MrsArchchancellorRidcully]

I am so cross about this. I didn't bf DD (no tt) as it just didn't work and I was naive and uninformed.
Fast forward to DS and I was determined to bf. Vowed to do it. Nothing would stop us.
He latched on in the delivery room but soon got cross and thereafter screamed and cried whenever I brought him to the breast. It was a nightmare. I asked 2 midwives and 1 pediatrician if was tt. No, was their answer.
At one week old we were sent back to hospital as he was not putting on weight as he couldn;t feed properly. There were fuck all help on the children's ward.
Their only solution was to readmit us to the post natal ward but from experience, I knew that would be useless as no one there helped me with feeding, despite many requests. My DD had her first nativity play the next day and I promised her I'd be there.
With my top soaking from all the milk that was pouring out of me, I cried as I agreed to ff him so he started to gain weight and they would let us go home.

We never went back to ebf. I rarely got enough from a pump, so ended up hand expressing into a bottle of formula so he at least got something of me. This went on for 4 long months.

At 7m old the hv casually mentioned it was obvious he had tt. Did I want him snipped. Oh, but it will be under GA.
He's now 2.7. his speech is well ahead of his peers but I still don;t know what to do as he struggles to lick ice cream etc.

I could literally scream at the hcps who convinced me he didn;t have tt and who destroyed my bf.
I am so so sad as we won;t have any more children, so I feel an utter failure for both mine. :(

[ChaffinchOfDoom]

MrsArch that is terrible.

[ChaffinchOfDoom]

and you DID NOT FAIL YOUR DC


you were let down by a bad system.

[Thumbwitch]

MrsArchchancellor - first and foremost, please stop feeling like a failure - your children are well and growing, aren't they? you have managed to feed them so that they are ok, even if it's not how you wanted to do it. I understand entirely your frustration and anger and sadness, but you are not a failure. The system let you down, as it has so many women. :(

Re. later TT snips - I've mentioned it on here before, a friend of mine's son had a quite severe TT that wasn't really picked up on until I was trying to teach him to stick his tongue out at ~3. He couldn't get it past his lower lip, the heart shape was very obvious so I said to my friend - "Look at his tongue tie!" He was having trouble speaking clearly (but he did also have glue ear and needed grommets) and it suddenly shed light on why her bf'ing experience with him had been so horrible! So they got him done. GA, sore for a few days, but it improved his speech loads.

In your DS's case, MrsAC, I would consider getting it done if he's struggling to lick icecreams, because he's probably going to have the dental issues as well.
Here in Australia there are some dental practices who do laser division of tongue tie now, because they recognise the problems it can cause with dental caries.

And of course, there is always the social aspect to consider when they grow up and get into relationships - tongue ties can be a bit of a hindrance!

[didiimaginethis]

I had TT myself so knew there was a hereditary link. All the MW who looked at DS tongue said no TT, HV said no TT.
BF was incredibly painful, my nipple used to come out all squashed on one side, I was misdiagnosed with thrush and put on (un-needed) medication because of the pain.
Finally after my constant, constant badgering and moaning about the pain I got a referral to a specialist lactation nurse at 5 weeks old. She looked at him for about 30 seconds, felt in mouth and diagnosed posterior TT - had it snipped there and then.
The relief was enormous, he could feed so much better and I wasn't in constant agony while feeding.
I agree that there needs to be much more education, training and specialist MW on wards who can diagnose and snip TT (within 24 hours of birth if possible)

[Cakebaker35]

Various healthcare professionals argued over whether my dd had one or not. It was so confusing and I just didn't know who to listen to. We had terrible problems breast feeding and just couldn't get the latching on right, I thought it was me. But I met a breast feeding support mw who referred us to get it snipped - but not until dd was 3 months old the procedure was pretty grim as dd was quite aware and she was not herself for at least 10 days, I would not put another child of this age through it. Still feel so cross that the chance to out it right in the first few days was missed over and over.

[theborrower]

Had a terrible time trying to BF DD1. She was EMCS, low birthweight, couldn't latch so paed said she had to have formula because she couldn't afford to lose weight. Midwives noted a TT in my hospital notes but she could suck a syringe so that was ok apparently. Cue next few weeks of attending BFing clinics and trying, crying, topping up and expressing. DD eventually started to latch and at one point we thought she was doing ok, and we stopped formula, but she lost lots of weight and we went back to regime. TT was diagnosed as she wasn't feeding effectively, and was snipped at 7.5 weeks but there was no quick improvement in the amount of formula she was drinking (ie wasn't getting less) and I'd had enough by then/PND so we cut back to BFing twice a day (even though didn't replace a feed) and formula rest of time.

Just had DD2 and it was in my notes that baby had to be checked for TT. BFing started off well but milk not quite in by day 6, baby feeding endlessly, nipples mashed, nappies not changing properly, was going to have to rest my poor nipples for a couple of days and express in the meantime and I decided "nope, I can't put myself through that again" so switched to formula. I don't know what we were doing wrong, we were told good attachment although slipping a bit, so don't know if TT or not, but being conscious of my previous experience and wanting to avoid the misery of expressing and worry was enough to make me swap.

[HumphreyCobbler]

Also no one AT ALL, even those who know about TT seem to have any knowledge of upper lip tie. My DS had anterior TT, posterior TT and a grade IV upper lip tie. Thanks to Mawbroon and MN I was able to have this successfully treated.

I paid to have the ATT snipped at day four, the PTT and ULT were lasered by a pediatric dentist privately when he was five months old.

[eatscakefornoreasonwhatsoever]

I would also like to point out that this is not just a breastfeeding issue. Whilst that is so important and heartbreaking for the mother-baby partnerships affected by its loss, it also has long-term health repercussions for adults.

A close friend of mine has just had major jaw surgery to correct her bite, a problem she has been recently told was caused by her severe lip and tongue tie. She is looking into getting her TT released as her LT was severed during the surgery and she can't believe how different it feels.

When I asked her about the TT she sent me this video which she says exactly echoes all the problems she's experienced, including migraines since she was 8 years old. Something that could have been easily remedied, perhaps, with a TT revision.

Her daughter was also born with these and had them revised by laser when they caused her problems with eating solid foods, even though she had had no issues breastfeeding.
Please watch this video so you can refute every single person who says that TT revisions are unnecessary. A 40 year old woman talking just after having had her TT divided and listing all the problems it's caused her.

[Thumbwitch]

You're right, Humphrey.

DS1 had a quite severe upper lip tie, but the GP didn't worry about it at all and it didn't seem to affect his feeding after the posterior TT was dealt with so I let it go. It was kicked out by his cousin (accidentally!) when he was ~3, so isn't a problem any more. DS2 has a different upper lip shape and not such a prominent tie, so I'm hoping that won't cause him any problems.

[ecuse]

Haven't had time to RTFT, sorry, but just to say my DD had a PTT which went undiagnosed (despite my asking various at various midwife/HV-led breastfeeding drop-ins about it) until 6 weeks.

My DD was briefly hospitalised at 5 weeks for failure to thrive. Paed just told me to stop stressing myself out, give her a bottle and don't worry about it. When I asked about the possibility of TT he actually said "oh, god, I'm so BORED of hearing about TT these days, it's the fashionable thing". The 'breastfeeding specialist midwife' also failed to pick it up despite my asking explicitly about TT. Didn't have the cash to get a private diagnosis, in the end an NCT lactation volunteer (fellow mum) took pity on me and invited me round for a chat and did a lay-diagnosis.

Our local hospital doesn't have a TT clinic (one midwife locally told me they lobbied for funding for a specialist centre and training, received it, only to have the paed consultants block it because they 'don't believe in unnecessary surgery' - this is not suprising to me given my experience with the paed as above). The hospital a couple of districts over has a clinic and I was fortunate they would accept my NCT lactation consultant as a referrer.

Nevertheless, it took nearly 5 weeks for an appointment to come up by which point my DD was 11 weeks, of which I had been mix feeding/unsuccessfully pumping for 6. My milk supply had never really established properly because she wasn't ever sucking strongly enough, so I really struggled to keep it up. She had her TT snipped at 11 weeks, after which feeding improved a bit (certainly hurt less!) but it wasn't a panacea. My milk supply never got back to where it needed to be to EBF and she was mix-fed with bottle top-ups until she was weaned. I managed to BF until 13 months in the end but it caused me massive stress and anxiety in the early months and I still feel sad about not being able to feed properly. Partly me being very PFB about it. But partly also, I think, because if you read up on it all beforehand it seems there's no problem with BF that can't be overcome if you approach the problem right. And the NHS likes to tell you about all the 'support' it gives for BF. But I felt like I asked everyone, everywhere for help and it just wasn't forthcoming. I felt badly let down. That sounds terribly entitled, but there it is. I tried really, really hard to do the right thing but at 11 weeks with a milk supply that never really got off the ground.... especially for something that I know could have been easily avoided with a quick snip in the postnatal ward. I cannot understand why it isn't part of the standard pre-discharge checks that they do on kids. They test hearing, reflexes, bowel movements etc. Why not just look for TT? It's the simplest thing in the world...

I'm putting aside money to get a private snip if the same thing happens again with my next baby, due in a few months because I don't expect any improvement in the NHS in the last couple of years.

[McFox]

I agree with everyone who has suggested that this should be an MN campaign. It has such a huge amount if serious repercussions but is so easy to solve that I'm just fuming about why it's so often missed and when it is picked up, is still often a battle to treat.

I feel like a terrible mother today because my DS has been trying to feed from me pretty much constantly today and hasn't got what he needed. He's ended up having 2 ff feeds today - the older he gets the more problematic it gets - and the 5 week wait until his NHS appointment seems like a very long time to wait. I called the local private hospital this afternoon and they can do it faster, but only if he's under 2 months old and it will cost £500. Because he's now 5 weeks old and there's only 1 consultant who can do it, he's now going to miss the 2 month deadline. Ive been advised to get a referral anyway and see if they will still take him, but I still need to find the £500. I could cry.

[ProcessYellowC]

Yup, glad to share my experience. Was diagnosed at birth, but not told that it might impact on breastfeeding.

Struggled with breastfeeding, inordinate pain that meant I had to bite my finger at every latch-on. I was lucky and DS was a determined little feeder so made me create tonnes and tonnes of milk getting over his inability to actually feed properly, but this in itself caused all sorts of nasties like mastitis and thrush. The local bf group suggested I go to hospital clinic, they gave me loads of literature about the procedure, said I had to try better positioning etc, and think about all "the risks" - clearly an attempt to put me off (and of course even more off-putting for DH). And they said it wasn't "that bad" (when the original bf helper had called around all the trainee helpers to see what a classic tongue tie looked like).

Anyways I perservered with the hospital clinic and eventually got DS booked in before he turned 6 weeks (the oldest that they could book babies in, on the basis they'd be 8wks before the procedure). The MW who carried out the procedure at 8 weeks said that was quite a pronounced tongue tie. DS was in theatre for less than a minute then out and feeding in my arms immediately. Three weeks later I had my first pain-free feed.

It was totally thanks to mumsnet that I carried on. A great poster, I feel bad that I can't remember who it was (maybe whomovedmychocolate), suggested tongue-tie was causing the problems and pointed me to a bf blog ran by a mumsnetter which was excellent help.

I have always said that if I have another I will not leave the hospital until the tie is snipped. It is all DH's fault. Lovely MiL was very sad that she wasn't able to breastfeed him past 2 wks... no-one even told her about the tongue tie could cause difficulties . It took me telling her 35 yrs later that he is very badly tongue tied which would have made it near impossible for him to feed well.

Oh gosh, this is probably my longest MN post ever! Yes it is a scary hole in the NHS, one that is so cheap and easy to rectify but everyone is scared because it's CUTTING BABIES. And women should put up with pain, it is what they are made for.

[ProcessYellowC]

ecuse that's horrible with the paed.
and McFox - the situation you are in is heartbreaking. Do remember you are not a terrible mother. Like ChaffinchODoom says upthread you (and your baby) are being let down by the system.

[306235388]

Dd had a 'snake tongue' with her tongue tie - first midwives denied it and then said 'operation' was very risky with lots and lots of blood loss and so they didn't do it anymore. Breast feeding was a disaster and directly affected my resulting PND. Spoke to another HCP at 2 weeks who got immediate referral and tongue tie snipped next day by dentist. Damage already done to my confidence and dd's feeding though. I complained.

[KatharineClover]

mcfox my local breastfeeding support groups (organised by an nct bf counsellor) keep a list of those who snip tt privately (private midwives/GPs) - here (south west England) it costs between £80-120. You could also ask on the fb group Tongue tied Babies Support Group for recommendations as your local private hospital sounds expensive www.facebook.com/groups/tonguetiebabies/

[standingonlego]

www.unicef.org.uk/babyfriendly/parents/problems/tongue-tie/

Obvious and severe TT with DS1 - 7 weeks of circles with various Paed / Midwifes / GP / Health Visitor....limped on BF with help of nipple shields to latch. Eventual referral to ENT / Maxi Facial Specialist whose PA then told me "he doesn't like to do those, you are probably wasting your time even coming in". I started to despair as feeds were now 2 hours long.

Then a chance conversation gave us a name. We travelled 3 hours down to Southampton to see Dr Griffiths. He was amazing, took one look at DS and said "do not worry you were right, TT is there, DS needs this, you should be proud to have managed to BF this long. You are in the right place. I can help. All children have the right to be able to lick an ice cream and stick their tongues out at their friends". Then I cried all over him. The procedure was quick, the difference amazing - I went onto to BF for another 10 months.

He also told me to attend my local baby cafe (Led by La Leche) to get support getting DS back direct to the breast. Can you believe not a SINGLE ONE of those army of health professionals I had seen had ever mentioned Baby cafe or BF support to me. Specialists on my doorstep! Once I saw them, they said - oh we could have referred you straight away if you had just come to us.

So DO NOT HESITATE, there is NO REASON NOT TOO! Do not wait, do not take the chance, do it and get it done properly. Best £150 spent ever.

DS is now 7 years old. He weaned great, talks perfectly but still has a short and slightly heart shaped tongue. A friends nephew did not have it done, took the the "wait and see" advice given. No action could be taken until speech delay proven so her 3.5 year old had to have a GA to have his tongue divided and now has a severe hospital phobia as well as having to have speech therapy. Do not take the chance.

For a young baby this is a simple, fast and cheap procedure. The older they get, the greater the impact and the worse the intervention needed.