Sign in here if you were told your baby wasn't tongue tied, only to find out later that he/she actually was.

(192 Posts)
mawbroon Tue 11-Sep-12 11:52:50

Me for one. Except he was 6 by this time.

And I was told it by the paed surgeon who used to run the tongue tie clinic.

FFS angry

Jaypeg Fri 14-Sep-12 17:45:39

My DD has a posterior one which they said was borderline. Turns out my partner has the same tie and I myself have the worst kind! It probably accounts for why i was bottlefed and why I have a lisp.

BF for me went badly from the very beginning. DD would only latch onto the nipple and by day 4 when I got a private BF councillor round to assess the tonguetie we were all in a state. In the end I gave up BF which really saddens me but there were just too many tears and problems. So TT is still intact until it presents a problem. My experience of the NHS is that they weren't that bothered. They didn't even raise it as a potential issue as to why I was having so many problems. It was a doula who spotted it and gave me the details of the midwife who would come round and do the op. If anyone is north london based and would like it let me know. She was really great.

DD1 had tongue-tie but was never officially told. DD4 has tongue-tie and had upper lip tie until she fell and bust it. It was the dentist who told us about DD4 aged about 2 and still breastfed.

Napdamnyou Fri 14-Sep-12 18:29:31

mawbroon I know, tight frenulum = Tongue tie,what a twerp! Kicking myself I didn't kick off but was exhausted new mum and didn't know any better. sad

mawbroon Fri 14-Sep-12 19:11:56

I understand Napdamnyou! I hate arguing with doctors and hcps, but sometimes they are plain WRONG!

SarryB Fri 14-Sep-12 19:25:08

I'm pretty sure LO has lip tie - but neither tongue or lip tie was ever mentioned to me by HV, MW or GP for the possible reason why we found BF so hard in the first few weeks.

DS had a TT which 3 paediatricians failed to spot hmm and when I noticed it when he was about 8 hours old, another paed was sent to tell me that they wouldn't do anything about it unless it affected his speech when he was school age angry

We had it done privately when he was 6 weeks old after WEEKS of arguing with the local NHS trust to try and get them to do it. It was money we didn't have but there was nothing else to do.

Interesting about the genetic link - I have a very obvious TT. Can't stick my tongue out, can't blow a raspberry properly, can't do full on snogging. My mum was mix feeding me by 6 weeks as I was never satisfied and not gaining weight.

messtins Fri 14-Sep-12 19:50:21

DS2 had TT - diagnosed the day he was born by the MW, then had several MWs and doctors disagreeing whether he was TT or whether it was affecting BF. I'm a peer supporter and had fed DS1 and I KNEW it was so stamped my foot until I got a referral to the lactaction coordinator who cut it day 3. Met another woman on the ward who had already given up on the BF she had hoped to achieve because they had told her that her son needed "an operation" to release his TT. So much misinformation, so many BF relationships needlessly sabotaged by this. How hard can it be to train MW or doctors to check for this in the day 1 checks??

SarryB Fri 14-Sep-12 19:52:02

TBH, I'd never even heard of tongue/lip tie until I visited Mumsnet.

SuiGeneris Fri 14-Sep-12 20:07:49

In hospital I was told DS1 fed beautifully. Sent home then readmitted via a&e about 18 hours later for weight loss and jaundice. When the infant feeding coordinator saw us she diagnosed posterior tt, but the hospital did nothing about it. Fortunately the coordinator put us in touch with a private lactation consultant who snipped it at home at about 10 days. Despite repeated problems we fed until 23 months...

whenwill Fri 14-Sep-12 20:15:27

me neither sarry b. MN got me checking why I'd had 7 months of feeding problems

mawbroon Fri 14-Sep-12 20:17:51

I first learned about it on MN too. However, I have been on here for 100 years quite a while, so it was a good few years ago now.

Only recently did I realise that most of ds1's health problems are related directly or indirectly to his tt.

whenwill Fri 14-Sep-12 20:19:40

sarrB!

Me - complete (and painful) nightmare sad

whenwill Fri 14-Sep-12 20:21:52

grrr... sorry SarryB !! shock

frazzled09 Fri 14-Sep-12 20:34:25

Similar story. 5 different community midwives in the first 3 weeks didn't diagnose it. Failure to thrive = hospital admission at 3 weeks. Silent and non-silent reflux so lots of medication. At 3 weeks BFN volunteer spotted it (lovely woman!) and independent consultant snipped it at 6 weeks (£100) after the NHS paed told me to just use formula and that he didn't believe in cutting tongue ties. Once it was snipped, my nipples healed and the pain and blanching stopped, and he PUT ON WEIGHT. Nursed until 2yrs 9months.

It reformed at 4 months, we paid to have it snipped again (as the HV refused to believe me about tongue tie and would only suggest formula and early weaning), and we were given better post-snip exercises this time to encourage him to move his tongue around to stop the scar tissue forming the tie again). He rose from 0.4th centile to 75th by 1 year old; which was back where his birth centile was and matched his height, having been a bag of bones for the first few months. No problems since. Except the reflux persisted for 10 looooong sleepless, tearful months - I am awaiting the results of some research on a potential link between tongue tie and reflux with interest.

Now he is 3yrs old and can stick his tongue out to lick an ice cream with no problem smile

I love the BFN volunteer who spotted his tongue tie [flowers]

I have a TT. I have had problems swallowing food all my life. Don't want to get it cut now though as that would mean speech therapy. My grandmother talked of her children (my Mum & uncle) having "short tongues" and so not feeding properly. It must be hereditory.

frazzled09 Fri 14-Sep-12 20:36:59

oops. thanks

Iggly Fri 14-Sep-12 20:38:35

Told that dd's was minor.

Turned out it wasn't - was 80% tied. Found at at 12 weeks after a most depressing three months of shitty feeds. I'm still angry about it now.

I've read a lot about TT since and it's not understood by many because BF rates are so low. Back in te day whenBF was more common, MWs knew their stuff about TT and it got sorted quicker.

Oooh, don't get me started!! angry I didn't even bother asking our local HCPs as I think by 12 weeks they thought I was rolling out every excuse in the book for the lack of weight gain in my DD. Had latch checked more than once, including by the feeding co-ordinator who pronounced all was fine. No-one ever checked in her mouth.

Very sad that the result was a private LC who diagnosed and snipped at 12 weeks by which time we had Failure to Thrive referrals and no option but to wean at 16 weeks!! sad angry, HV's response when I told her was "you must feel very let down."

We are still infrequently bf at 7.5mo smile

Having had the same issues with DD1 and now knowing that it's genetic, it does make me wonder if she also had/has TT.

mawbroon Fri 14-Sep-12 21:15:34

frazzled who is doing the research? Can you post about it on here when it comes out?

DS1 had really bad reflux and bloating which stopped after revision of his tt earlier this year, despite the revision not being done properly.

I would be really interested in seeing the research given that my sample of 1 is not very scientific smile

Kaekae Fri 14-Sep-12 21:48:07

My dp has a tongue tie and both my two DC were born with a TT. My son is five now and has never had it cut as he's is very minor. But I could not breast feed him because it a gone undetected even though I'd asked several Midwives to check. Then two years later I had my DD I asked as soon as she was born about a TT as I was determined to BF. Again I was told everything was fine. Five weeks of trying to BF in agony and not being able to take it anymore I went to my GP, again told she didn't have a TT. I was at breaking point by then, my poor nipples were bleeding and I was so down. Then whilst in the GPs surgery I spotted a notice for a breast feeding clinic, went alone and thank goodness got some help, the lovely lady discovered my DD did infact have a TT, had to wait a few weeks though for an appt to have it cut and sadly I just had to give up BF as I got an infection and my breasts just couldn't take the pain anymore! I was so upset not to have been able to properly BF for the second time but finally I was pain free. My children's speech is fine and they do not have any problems eating etc.

perfectstorm Fri 14-Sep-12 22:53:35

I had a lactation consultant cut it, then come back when he still wasn't feeding, then go very quiet and weird. We found out why when we had to take him to a paed surgeon to get the thing done properly - she'd missed 2/3 of it and hadn't had the guts to fess up when she did her 2nd visit.

She charged us for that 2nd visit, too. angry

I expressed for 8 months, 7 of them exclusively, because by the time I gave up trying to BF, DS was refusing formula. I had crippling PND and failed to bond for a full year in direct consequence. My 2nd child, should I be lucky enough to have one, will be formula fed from day one, and anyone seeking to hector me to the contrary will be told to fuck themselves sideways like the ignorant patronising cunts they are, because gasp a mother with severe PND is not terribly good for a baby, either.

I wish, wish wish I'd just done as my GP advised and moved to formula after the first couple of weeks. We'd all have been so much better off.

perfectstorm Fri 14-Sep-12 22:55:26

Just to clarify: I am not saying peer supporters or lactation consultants are cunts! I mean the kind of judgey interference I did, sadly, encounter when I was wondering about giving up.

Formula is second best. No doubt about it. But there is so much more to being a mother than how you feed.

imogengladhart Fri 14-Sep-12 23:03:44

Message withdrawn at poster's request.

fapl Fri 14-Sep-12 23:10:50

Shit, bloody hell, what you learn on mumsnet!

Talking about midline issues, DS2 has posterior tongue tie and lip tie, and I never knew what a sacral dimple was till 2 minutes ago when I read this thread and he has that too! Me and OH always thought it looked a bit weird when we were wiping his arse during nappy changes.

Another midline issue I learnt about on mumsnet a while ago that boys have is and was termed 'snapping the banjo' if I remember correctly, something to do with a bit of the skin in the foreskin breaking or tearing when being vigorous with their pens for the first time.

Does anyone know of a resource that details all midline issues in one place?

I also did not take folic acid till maybe 8 weeks preg, should I be feeling totally shit that I did something wrong?

I'm finding this fascinating. DS2 has/had a Class IV upper lip tie (self-diagnosed, even my Ind MW failed to spot it) which may account for a slightly rocky start to bf and his consistently rubbish latch. (He thrives, though and is still bf at 21 m.) His was thick and ran between his front teeth, making a diastema, and attached behind the teeth. It blanched when you tugged at it. It was so bloody obvious once you knew what you were looking at! hmm I'm really disappointed that so few HCPs even know to check for it.

He also has what I'm not allowed to call speech delay yet, since he's not yet 2, but anyway, he has no speech, at all. What do I make of this? confused Anything? I'm grabbing at straws somewhat because I'd much rather it was something potentially 'fixable' behind his lack of speech.

He did partially tear his tie when he tumbled off a chair blush but I think it re-grew. From time to time it bleeds slightly when we're brushing his teeth, so it's clearly still too tight. I've mentioned it to the HV and one GP and they were both pretty nonplussed, so I'm not sure whether there's any point taking it back to them.

(as for mid-line defects - an antenatal friend had a baby with v severe tt, she couldn't breastfeed at all, and that baby also had a deep sacral dimple. I had no idea that tt could be related to spina bifida and other mid-line developmental problems.)

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