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).

YANBU

Exaggerated latch technique worked for us until snip at 5 days old. It was found minutes after birth so assumed part of routine checks. I had bleeding nipples, then mastitis but carried on and she eventually took the nipple (with the exaggerated latch technique).

I really feel for the OP, it's such a shame that different areas/hospitals have different levels of support.

It's easy to say, but don't beat yourself up that you are switching to formula. If you believe you have tried everything to got lo to lath, then you have to think of you and your babies' health. Wishing you all the best OP

*get not got

YANBU - I always thought it was supposed to be checked, but I was in such a daze after DS was born I just assumed it had been done with the rest of the checks.

Thankfully, he never had any problems breastfeeding, but above and beyond that, it also has the added risk of causing speech problems later on, so when it was eventually diagnosed (quite severe too!) at 12months, we were so cross as it meant he had to have general anaesthetic, albeit for 5mins, to get it snipped. This isn't because it hurts, btw, but because a child that age won't just lie there as someone approached their mouth with scissors!!

It was a load of unnecessary stress to go through, and was yet another on the long list of errors with his birth.

Sigh.

Ha ha mine used to do that but I didn't know why!!

My gp also refused to snip it, so I got it done privately. Bupa DO cover it.

My son got diagnosed by the midwife after we got home and he had lost a pound. she first diagnosed it by looking at my lipstick shaped nipples! but there was nothing that could be done about it apart from get it snipped privately....which was impossible to find anyone to do it! It was quite upsetting at the time to be honest. Anyway, we used nipple shields for a few weeks to let me heal, and a bit of formula here and there, then he managed to get used to feeding slightly differently and once off the shields fed for 16 months. He is 6 now and it hasn't affected his speech thankfully but he can't fully stick his tongue out and it is a bit heart shaped.
My daughter was born in a different area where you can get a tongue tie diagnosed and snipped by the nhs on the same day...thankfully she didn't have one...(she sticks her tongue out perfectly btw!)
Crazy that it can differ so much in different health authorities!

YADNBU!
DS did get checked in hospital and was given the all clear.
A month later after he'd failed to put on weight, he wasn't sleeping and I was in agony, a BF support worker diagnosed tongue tie after DS had been referred to the hospital for tests.
Luckily for us, we did manage to continue to BF but I really feel for the OP.

I think this thread has shown the need for better checks and training for HCPs.

The first thing I said when I saw my baby - literally when he was lifted out of me was "oh he's got a tongue tie" (I could see the heart shape of his tongue and must have read about it somewhere in a pregnancy book). There were three midwives there, two doctors and a pead, who all looked at me like I was mad.

My baby couldn't BF and I asked 3 more peads and too many midwives to count over the next 48 hours to check for the TT. None of them diagnosed it and my baby was repeatedly forced onto my breast.

The hospital then insisted I formula fed. I found a private lactation consultant who came at 72 hours and could straight away see that I was right. The TT was snipped (twice in the end over the the following week) but it took another 3 weeks before he would go my breasts which was hell and it consequently took me around 3 months to be able to really get going on the BFing.

I still cannot believe that so many people could be so wrong and not listen to me.

YUNBU.

Wow I've been pissed off for a year but some of these stories are much worse than mine! DS admitted to hospital age 3 days, unresponsive, to be tube-fed, having lost over 10% birth weight. I'd asked a total of 6 midwives and nurses what was up with feeding by the time he lost consciousness, always told he was doing fine and newborns were sleepy. It took till he was 3 weeks old to get snipped, and that was because I was in such a bad way! First good deep feed, 3 weeks 1 day.

So the question is, what should be done about it. I don't know what the MN campaigning rules are, but could this thread be sent to the Health Secretary with a request for a review of TT policy?

I don't recall if any of mine were checked for it, but I would recognise it if I saw it. None of mine have had it.

YADNBU. Especially as it is such an easy thing to rectify as well.

Totally agree. As a first time mum with all kinds of post-labour problems myself, DS's tongue tie almost sent me over the edge... finally identified after 13 weeks and I had to fight so hard to get it clipped... I was so exhausted at the end of it all that we had to mix feed in the end anyway. If I'm ever lucky enough to have another baby I'm going to refuse to leave the hospital until someone's checked. Horrible experience and so easily avoided.

I noticed my son was tongue tied about 4 hours after he was born. i spoke to the staff on the ward & was fobbed off. They refused to clip it.
About 8 days later, after loosing weight, we were referred back to the hospital to have it clipped, this was done within a day or so. I was annoyed with myself for not sticking up for myself whilst in the hospital.

YANBU. My baby was not diagnosed with tongue tie until 14 days, after a series of failed examinations by NHS professionals, including the hospitals own breastfeeding coordinator. I carried on breastfeeding only through sheer bloody mindedness and nipple protectors (I had bleeding nipples). Luckily my baby had the painless and fast procedure at 16 days old, and from then on breastfeeding was pain-free and fine. I was very angry and frustrated though. In France they check babies for tongue tie at birth.

And I know of a few mothers, of various generations, who were not able to breastfeed, and who blamed themselves - then found out years down the line (via speech therapists) that the reason was their child had tongue tie.

Agree should be checked and definitely agree it should be snipped ASAP. My DS3 breastfed like a dream despite having a tongue tie and when he was checked out by a ENT doctor at age 2years because I had insisted it needed looking at I was told it was moderate, and did not need any snipping. Because DS3 needed another serious operation doing at 2.5years anyway I asked the surgeon then to snip it and from then on it was like a volume knob had been turned up and his vocab and confidence just seemed massively improved. I know DS3 would never have had the snip done if he had not needed the other operation and I think it would have really affected him.

Thanks for contributing, everyone. Just up sterilising stuff so thought I'd check in. So sad to hear this isn't a rare experience.

dd had posterior tt but it wasn't picked up til she was 6 months old. We were told to leave it as she was too old to have it divided without GA. We somewhere that would do it without GA and she had it done. Best decision as dd has now been dx with CP and whilst her legs don't work very well, her speech is fantastic!

Sorry to hear about your experience OP.

When I was in hospital after having DS and struggling to get him to latch, 7 different midwives (some trainees admittedly) were trying to help me and only one suggested tongue tie. She convinced the paediatrician to have a look who then said it wasn't a bad case of TT and that it was more likely my technique that was the problem

MW who spotted the TT still thought this was the issue and gave me the number of the nearest HCP qualified to snip it. After another stressful day in hospital with DS only feeding expressed milk from a syringe / cup I called her and had the TT snipped at another hospital. DS was placed in my arms and latched perfectly straight away.

I'm so glad that MW spotted it and stuck to her guns as without her, I doubt I'd have been able to BF. I still get when I think of that paediatrician and now I'm for the OP and others on this thread.

I'll tell you the story of Dsis who came with us passing out when DS's tongue was cut another time!

This is such a heartbreaking thread. I'm bookmarking it for future reference. It seems so hit and miss, whether you get a well-trained or well-informed HCP or not...

DS1 - not sure if he was checked. No tt. DS2 - he was definitely checked by my Ind MW and by the MW colleague she got in to do his 6 day check at home. No tt. But ... they both missed the upper labial frenelum tie, and his is very obvious. Well, it is now, anyway, now he has teeth and a considerable diastema between them. The frenelum is very thick and goes between his teeth, anchoring behind them, and blanches when pressed. I'd noticed already that he doesn't flare his upper lip out much for feeding. Latching was certainly an issue when he was newborn and I did have some pain, but could see he wasn't tt. Labial frenelum ties can interfere with effective breastfeeding, but are mostly thought to cause problems later on, with speech and also by displacing the adult teeth when they come in.

13 months on, we're still breastfeeding, and he just broke part of his lip tie falling off a chair. (as you can imagine, I'm conflicted about that, but he didn't damage himself in any other way) It's still there but notched now, so perhaps it'll get torn back the rest of the way with general wear and year. I spoke to a LLL aquaintance of mine and she didn't know anything about labial ties, so if tongue ties aren't generally recognised, I don't think there's much chance of a labial tie being sorted out medically.

I'm afraid I haven't read the whole thread. However, I insisted it be written in my notes that DC2 be checked for tongue tie at birth. She was, it was pronounced no tongue tie, and yet we went on to experience horrific feeding problems very similar to those with my first. Since then my GP has also denied there is a tongue tie, but I am extremely sceptical given the nature of our problems. These included classic tongue tie signs like being totally unable to drink from a bottle without leaking half the contents, and being unable to hold a dummy in her mouth (both necessary evils that I tried in desperation).

Anyhow, there is a happy ending as she's 19 months old and I'm still b/f her. But my point is that I'm not sure checking at birth will help unfortunately. In fact it could make things worse once it is written in stone that tongue tie is not causing your pain.

My poor ds2 could not stay latched for more than 2 sucks. Luckily I had a easy previous bf experience, and had done peer support training, so I knew it was not right and could see a tie. My local bf counsellor referred us to a hospital with a clinic for tongue tie, and we managed to get in when he was 6 days old because of a cancellation - usually the wait was 3 weeks
When I fed him afterwards there was an instant improvement. I think tongue tie can be over diagnosed - if no problem with feeding, there's no reason to snip a newborn. It defiantly hurt my ds, he was doing a pain cry. But I'm glad I had it done. He's 2 now and were still bfeeding.

YANBU and it's shocking to read so many similar stories.

I think that ds (now 8 months) had/has a tongue tie but I couldn't get anyone to look at it to tell me either way. I had 4 years prior bf experience plus plenty of help with deep latch techniques etc, but feeding was very difficult and painful for the first 10 to 12 weeks, with a lot of clicking during feeding and blanched and lipstick-shaped nipples after every feed. Ds was quite supernaturally windy too, and has a heart shaped tip to his tongue when he points it upwards.

I suspected tongue-tie very early on but every midwife/doctor/HV that I mentioned it to dismissed the idea without even looking: one HCP said that tongue-tie couldn't be a cause of my feeding difficulties because if he were tongue-tied he wouldn't be able to feed at all; another said that a tongue-tie would have no effect on breastfeeding anyway so there was no point examining him. At some point I gave up pursuing it, and eventually the feeding got less painful.

I had similar feeding difficulties in the beginning with dd (now 6 yrs) but didn't know anything about tongue-tie at the time, although I noticed that she never stuck her tongue out like other babies. Her speech has always been fine, except that she does have quite a pronounced lisp and I wonder whether this could be related, and whether I should have persevered in trying to get ds examined in case he has speech problems when the time comes.

Anyway, OP, I absolutely agree that this should be routinely checked at birth. Sorry you've had such an awful time with it.

I'm at these waiting times!

I'm in Sussex and although the only qualified HCP at my local hospital to do the procedure was on holiday, I had the number for a MW at a hospital 30 mins away who could do it and I was able to go that day. (The day after I was discharged from maternity ward).

Seems I was lucky, I'm not sure I would have been able to continue BF had I had to wait weeks for the TT snip!

My DS had tongue tie. It was picked up at by my usual midwife when she came at 7 days. Many other HCP's had missed it. She sent me to a breastfeeding clinic the following day who in turn referred me to King's College Hosp to have it snipped the following week. I thought was OK as DS was able to feed to an extent albeit not as well as he should have been. I did think it was too long for those who couldn't feed at all.

DS in my second and I bfed DD for 15 months so I knew thing were not quite right with DS. Luckily I realised that he could feed better if I went for rugby ball hold for every feed which I did until his TT was sorted.

I had to point out to the HV that my DS3 had TT. She then referred me to the local consultant, who saw DS3 at 7 weeks old. HE couldn't snip it, as it was posterior and he only did anterior ones. So we were then sent to a Consultant in London, an hour's train ride away. He finally got his TT snipped at 10 weeks old.

However - that hasn't been the END to the problems. I found out when DS3 was 16 weeks that the reason I was still having bf problems was because he ALSO has an upper lip tie that is quite severe. It is so severe that he cannot drink from a bottle because every time he tries, he collapses the teat, because he can't 'flange' his upper lip. It still causes problems BF'ing too, but as I have cast iron nips am stubborn, I am sort of coping.

DS3 has been referred to the local consultant 4 times now - and isn't even on the WAITING LIST for an appointment to be SEEN to have it LOOKED AT. He has been referred twice by the HV, once by the BF counsellor, and once by the GP. I have ALSO asked the HV to chase it up. When you bear in mind the first referral was done when DS3 was 16 weeks old, do you want to know how old DS3 is now? 51 WEEKS.

That is 35 weeks of waiting, without even getting an appointment, for something that NEEDS doing, as the HV has confirmed it is already holding back his speech, and afffecting his feeding, as I can't give him a bottle or a beaker that he can drink from, for something that was MISSED by both the local TT consultant that first examined DS3 at 7 weeks old, by the London Consultant who did the TT snip at 10 weeks old, by the MW when I first complained about feeding problems AND by the HV who looked under his tongue when I complained that I hadn't had the relief I expected from the TT snip...

So, OP, YADDDNBU in thinking that the least that could be done is to have MW's in the hospital that are TRAINED to pick up TT and Upper lip tie (which often comes along with a posterior TT).

In fact, as the parent of a dc who is partially deaf, that didn't get a newborn hearing screening because they didn't exist 13 years ago - I would rather the NHS trained it's MW's in spotting TT than in doing a newborn hearing screening in the hospital, which would JUST as easily be done with a routine test by the HV in the community as it used to be done. Or even by the ENT departments that do that job day in, day out already.

Oh gosh I never thought of that with bottles. That used to happen with DS all the time, the teat would totally collapse in. I never made the connection but both he, and DD, have upper lip ties. I don't know how severe as I've never explored the issue further although I'm aware that probably didn't help our b/f in either case.