to wish babies were checked for tongue tie routinely before leaving hospital?

[MixedBerries]

Now I don't want this to descend into a slinging match about feeding choices (which usually happens whenever bf or ff are mentioned) but is it really unreasonable to expect that this is something that should be checked for by the paediatrician before leaving hospital? It would take about 1 minute.
According to NICE and UNICEF (who I assume know a thing or two) it affects 3 to 10 per cent of all babies yet at least 5 midwives, one health visitor and one paediatrician failed to check or notice it in my DS. It's not even a "hidden" posterior tongue tie. Once it was diagnosed (at 2 weeks following bleeding nipples, weight loss and failure to latch), we had to wait a further 2 weeks to see the lactation specialist as she was on holiday and is the only one in the area qualified to clip it. They we waited a further week to have it clipped. That didn't work so we had to travel half way across the country to see another specialist who clipped it again at 7 weeks. By this time DS had lost interest in boob feeding so I've been trying to get him back on and expressing in the meantime.
Now at 13 weeks, he completely refuses the breast and I don't have the time to express every 3 hours so essentially, once my freezer stash has run out, it's the end of bf. IF anyone had checked, I've been told it could have been sorted the day he was born and all this could have been avoided.
So in the light of "breast is best" being repeated over and over by the health profession, don't you think it's something fairly fundamental that could be checked for by people who are supposedly here for the best interests of our children? I'm so bloody angry. (Yes, I KNOW ff won't kill him but we really wanted to bf, particularly since asthma and allergies run in the family on both sides. And my point is that this could have been avoided so easily).

I should also add that there is a significant family history of TT. DS2 had a TT that wasn't diagnosed until he was in Speech therapy at 4yo. Because he was non-verbal. I had ended up SPOON-FEEDING him milk until he was 15 months old, while being told that it was all due to his muscle problems (he has EDS type II/ Hypermobility syndrome).

I had a TT snipped as a baby.

My Ex-P, DS2 and DS3's father had a VERY severe, unsnipped TT that caused speech impediments.

Yet STILL TT wasn't picked up with DS3 until I insisted he had one.

and at your experience HuntyCat Here's hoping somebody pulls their finger out and that your DS is seen ASAP

I am still BF'ing DS3, he is going to be 1yo on Tuesday.I want to stop (or at least have a blardly BREAK for more than 1.5 hrs at a time) but I can't. My job on Monday is to kick butt by phoning the consultant's secretary DIRECTLY. As I have done everything else in my powers to get an appointment with him!!

I didn't notice about the chocking on food? Is there a connection then? I am asking because DS3 constantly chokes on his food, isn't eating enough solids, and has dropped over a centile in the last 8-12 weeks. Could it be down to the upper lip tie?

My dd is now 2, and by 3 weeks and still not up to her birthweight, extremely poor latch and weak suck, I knew there was something wrong. Every hcp I saw denied she had a tongue tie. I had to exclusively express for her and managed it for one year and almost lost my mind doing it.
2 years later and the exact same thing happened with ds. This time I had his tt snipped privately by a lactation consultant. But a midwife and a hv, after me asking them to check said ds did not have a tt. I asked about his palate, they both said he was fine. Even though at 4 weeks old he weighed less than his birthweight.
Lactation consultant came to the house and snipped it, and also told me he has a high palate to go with his posterior tt. Things are much better now for ds, although not perfect.
I look at dd and feel angry at what I went through with her. She now has poor speech development and I am waiting for a referral to get her tt snipped under GA.
My experience with most hcp's, is that as soon as you start mentioning tt to them, they start denying it. They look at the mother as though it is her fault that the baby is not thriving. They hold you responsible telling you that you have low supply, that you are not feeding the baby properly etc. This is terrible when you are already feeling low, tired, and very raw.
Everything could have been so different if my concerns were listened to, and my children had been checked properly at birth..

My 9yo DD has a tongue-tie. At 1 week old when i said i couldn't stand bfing any longer mw said "she has a bit of a tongue-tie so maybe that didn't help". I wasn't in a good enough state to take it in or follow it up having never even heard of tt. She had speech therapy at 4. Notes say "mother says she has a tt" but therapist was clearly sceptical. Now she is my wonderful, happy and full of stuff to say but frequently talks so that we don't understand her. She is also a singer, and can't keep her jaw dropped like the other girls. Eg to sing lalala she has to move her jaw where as others just use their tongue. There is also no hope of her ever rolling her Rs. I have no idea whether to push to have this fixed now, or leave it until she's old enough to push for it herself. We've talked about it, but she's most concerned about the pain of having it done.

Yes, I would add that I have experienced a hereditary link with tongue tie in both sides of the family: grandmother, auntie, husband and daughter on one side; father, sister and daughter on the other. The HCP who eventually snipped DD's tongue tie (what an amazing 30 second procedure!!) said that many experts suspect a hereditary link but haven't been able to do a large enough study to prove it and come out and say so.

Midwives should include a family history of tongue tie in pregnancy notes, IMO. Even better, every baby should be simply checked at birth.

It was my HV who noticed with dd, who was born in the UK - so she was at least 2 weeks old, as we had been handed over from the midwife. DS1 was born here in Germany and had one too, which the paediatrician spotted straight away at his newborn check, and the midwife who came out to me noted and asked about too.

I agree it should be a quick and simple thing to check for, how weird UK paediatricians and midwives don't all appear to be trained to and it is not just added to the list of basic checks.

I have never heard of tt (except in relation to when someone is nervous and can't get their words out)

When DD was born she couldn't feed for nearly 24 hours. The MW's kept shoving her mouth on to me and leaving. It wasn't until I got assertive arsey and said "just stand there and watch" that they said "oh her tongue is over the nipple, we'll get a plastic nipple shield", She eventually learnt to feed properly without the shield a week or so later but I never seemed to satisfy her and had to introduce a night bottle very quickly. Could this have been tt? She also spoke very late but produced whole sentences when she did.

I also had to stop BF my son after a few weeks as he mangled me so much and I was bleeding, had thrush and mastitis.

Both children are fine now but I'm wondering - as I had never heard of TT before.

I agree. At my local hospital they do check as part of the 24hr newborn check - and in fairness picked it up in my ds2 and ds3. Only issue the is that there is only a clnic for snipping once a week which is massively busy. So in once case, ds 2 was born on the day of the clinic, it was full the next week, the only person in the world who could do the procedure was away the following week and so it was nearly 4 weeks before I managed to get it done somewhere else. Not really a good idea to go 4 weeks without proper latch on i don't think. Luckily he was ok with bf, depite a 90% tt. ds3 was born the day after the clinic, the next week was already full so again he was 3 weeks before snipping. He was never that great a bf and I can't help wondering if this contributed - despite his tt being less pronounced.

So yes I thin it should definitley be part of the routine checks everywhere and they also need to make sure the hospital has facilities to snip the tongue withing the first week or so i.e train more midwives to do it.

I was told by the consultant that tongue-tie is not hereditary. This is rubbish, both my children had tt, and my husband had a tt which affected his speech and was snipped without anaesthetic when he was about 6! I would lay money on another child (if I had one) having a tt.

HuntyCat, my dd1 also has an upper lip tie (where the skin runs through the front teeth and anchors the top lip). That's why she sucked like she was sucking a straw! We still managed 10 months of bf though, as my lovely husband said, after my hysterical crying after re-latching her hundreds of times (as told to by stupid HV who hadn't checked for tt), ok, you are not going to win any prizes for style, but she's happy and putting on weight, just get on with it in your own way. And she fed well and for a long time.

I do wish I'd known about it though, I only found out when she was nearly a year, and weaning was such a nightmare, I thought it was normal when people said their children 'choked' a bit, I only realised they didn't mean actually choking when I saw another child being fed. My dd1 did choke properly one day and I had to bash her on the back. She developed speech early, and had a nice speech defect which developed while she was on the waiting list for snipping (under GA).

I agree not all babies need to have their tt's snipped, but that doesn't mean it's overdiagnosed, it isn't. If you diagnose it you can then have a sensible conversation about whether it needs sorting out or not, if you are feeding well, have no issues with pain, have no issues weaning, and no speech probs, it's not an issue. I would go for prevention personally though and get the tt snipped at birth, it's much harder to do it later on, as we did (and she still has the upper lip tie).

We were told is WAS hereditary. DP has one but didn't know about it until DS went to the clinic and the woman noticed it on DP! He was bottle fed though but has all the telltale signs- gap in teeth, high palate, can't stick his tongue out far! Doesn't cause him problems thankfully. I have a mild one.
I agree, not all TTs do cause problems but it ought to be noted and be a first suspect if/when bf problems are encountered. Particlularly since the bf problems associated with TT are quite telltale.
And definitely need facilities to separate it quickly if needed. When the midwife told me "oh, it's very easy to sort out" I felt some kind of hope. She then told us we'd have to wait 2 or 3 weeks and my heart sank. I mean what are you meant to do in the meantime? Starve your child while your milk dwindles away? I couldn't bf (blistered bleeding nipples and mastitis) at all so was lucky enough to be lent a double pump while we waited.

To the OP: Yes!

My story is that my 10mo DD had a posterior tongue tie.

Although I didn't have any issues with her weight etc, I just found bf abit of a faff compared to my other breastfeeding friends- and I hired a Lactation Consultant (best £100 I've ever spent!) who picked up on her tongue tie, and then that led me to taking her to my GPs. Two GPs declared her tongue entirely normal, so I paid money to see a ped surgeon privately. He at least acknowledged that she had a tongue tie, but it wasn't worth sniping (and he'd only do it under general anyway). That was the worst £140 I've ever spent!!

Then I rang 'milk matters' and spoke with some other Lactation Consultants, and the lovely Ann Dobson (who is trained in sniping tongue ties and travels the length and breath of the country sniping them- google her!) came and sniped DDs at 12 weeks. I can't recommend her enough.

The procedure was over in a couple of secs and bled abit and then she fed straight away and now we've not looked back!!

On another note, my husband had his sniped at 15 YEARS and found it abit traumatic, so they definately should check for them and snip them at birth!!!! Its affected his speech. Apparently Jamie Oliver has a tongue tie too....

Didn't realise they could grow back! Having had a poke around in DS's mouth, I think I'd better start the process of getting him checked again...

There was a girl at school with me who looking back I think must have had TT. She was generally believed to be thick, mouth open and big tongue on show, and was the target of bullies and pretty lonely. I saw her a few years later looking v glam, complemented her, and she said everything had changed when she had an op on her tongue. I would hate any DC to go through what she went through

YANBU. I had a similar situation with DD 1. All the mws said she was being "lazy". At least 50% of all bottles went down her clothes rather than her throat ( we gave up bf due to inability to latch). The mw supervisor finally found the tt at 3 weeks, but by then she had thrush due to such a poor feeding technique. Two courses of drops later it was finally sorted at 5 weeks. This combined with a traumatic labour really did spell the end for bf for me - which was a great shame.
With DD2 (unexpected unplanned hb) my husband insisted on it being checked straight away (probably cause I spent the whole pg going on about how we wouldnt let it be missed again)- and as such she was checked for tt before we even got in the the ambulance to transfer in due to pph. I then asked on arrival as I was not aware she had already been checked.
It made our experience so difficult the first time round -
Looking back I probably should have attempted breast feed at 5 weeks - but at the time it seemed too late. As others have said - try and get plenty of knowledgable and practical support from reliable sources.
Wishing you all the very best. x

YANBU
My DD (DC2) never fed very well from the beginning, and made a clicking noise when she fed. Because she is DC2 I knew it wasnt right - soooo painful. she wasnt gaining weight at all, and was contantly feeding. NOWEHERE in any of the many books I had read about babies was tongue tie mentioned, and it wasnt mentioned in my antenatal classes - NCT or local hospital. LOts of talk on brestfeeding, but no mention on TT.

Finally a MW noticed when she was 3 weeks old when I had already started mixed-feeding :( and then got a referral for 2 weeks later for snipping. Made a HUGE difference. BF stopped soon after cos suppply was ruined.

DD2 was born 2 years later, and as soon as she came out I asked about TT - yes she had one. "but clinic for snipping was this morning so you'll have to wait a week" I was furious. Someone then told me 1 of the MW was trained to do it so I asked every single MW I came across when it could be sorted.
snipping MW came in next day & snipped. DD didnt even wake up! BF then no problem.

I think it should be checked for routinely, and also mentioned in NCT/NHS antenatal classes. The clicking noise is apparently classic sign but how was I supposed to know?

YANBU. I spent a week desperately trying to get my son to latch on, feeling like the worst mother ever, being prodded and pushed about constantly by mid-wives until I had mastitis so severe I had to stay in an extra couple of days to get it sorted and only then did one doctor notice my sons apparently very obvious tongue tie. It shoudl be checked.

poshme, my first also clicked so loudly when she fed, I can't believe all those HV's, midwives and even lactation consultants heard her clicking and didn't recognize the sign. I only learnt about it later on.

My DS1 had a tongue tie and even more worryingly a cleft palate (which is something that is on the newborn checklist) that were both completely missed. My DH spotted the tongue tie at about 5 days old, but they were very dismissive of this being part of the feeding problem. I gave up breastfeeding completely soon after as DS1 was still failing to put on weight and I was desperate. DS1 was in SCBU for a fortnight due to failure to thrive, and the cleft palate was never noticed. Wasn't found until 6 weeks old - by my mum! In my opinion (at Ninewells hospital, Dundee at least) the midwives, paediatricians and SCBU nurses probably couldn't find their arse with both hands never mind identify a tongue tie. It should definitely be more widely recognised and understood by the health community.

If my first DS had been checked for tongue tie when he was born it would have saved me from eight weeks of bleeding nipples, tears and the feeling of failure. We did finally manage to breast feed (I only kept on trying because my health visitor, breast feeding counseller and doctor made me feel guilty about considering giving up) DS was diagnosed with having a tongue tie. It saddens me to think that those precious first weeks were spent crying in pain rather than enjoying my wonderful little boy.

Fairyqueen, I had speech problems through childhood and was finally diagnosed with TT at 11 by an elocution teacher. I had the snip under general anaesthetic and stayed one night in hospital. My throat was sore for a few days but that was the full extent of the pain (and I milked it shamelessly to get extra ice cream).

I had elocution lessons after that to learn how to use my tongue properly but it really didn't take that long. I was just so, so glad I'd had it done because it improved my life hugely.

Good luck to your DD, whatever she decides, and if she does have any questions or anything I'd be more than happy to help.

My ds2 has tt which was missed until he was a few weeks old but he doesn't seem to have any difficulties feeding and is gaining weight well.

When we asked the doctor about it he said it would stretch itself and that he had "only ever seen one baby in his whole career who really needed treatment for tt."

So here we are. No problems yet but I'm a bit worried it might affect his speech etc when older.

My DS was born with tongue tie... We were in hospital for about four days afterwards and it was picked up by a mw on day 2... every member of staff we spoke to had a different opinion about it, with the consultant saying nothing needed to be done unless he developed a problem with speech, despite the fact we were in there because he was listless and not feeding properly

When we spoke to community mw at home, fully prepared to fight our way to treatment, she referred us immediately to a consultant who did it the following day (Sunday).

DS wouldn't bf until it was done and then only with nipple shields... when I eventually managed to get rid of them I had all kinds of problems due to latch. I do wonder if it's not completely gone as his little tongue is heart shaped and he has problems with 's's. I need to have a proper check, actually, reading this.

My DS had a 80-90% tongue tie when he was born. Luckily my fab community midwife spotted it on day 5 and we popped him to my GP's where she snipped it. Slightly traumatic for me, still in a post birth daze with no idea what the hell had just happened then told to hold down my son whilst she stuck a pair of scissors in his mouth. MW was wonderful but then she did have a fascination with TT and was trying to train another mw (who wasn't keen). But I didn't stay in hospital long enough for me to even eat let alone for them to check for a TT.

DH has a tongue tie but it hasn't caused him problems, actually he can lick his own nose so god knows what he would be like without his TT!! Lucky me!:)