Tongue Tie - should be checked for at birth

[tyotya]

Why don't they check for tongue tie as soon as the baby is born??? My granddaughter went for 12 days without a proper feed due to this condition - she lost over 1 lb of her birth weight, and the parents were absolutely distraught because they couldn't figure out what was wrong. Daughter in law was in tears because BF wasn't going right. The problem was eventually spotted by a MW at the BF clinic. The doctors and MWs who failed to notice this are a bunch of idiots whose incompetence could have killed a beautiful little baby, and certainly ruined what should have been a joyful experience for the parents, especially the BF. They made stupid excuses like 'girls don't usually get tonge tie' and 'it was a particularly difficult case to spot'.

I am furious, but unless you're rich enough to afford the world's best lawyers there's nothing you can do. Anyone else got an opinion on this?

BTW..would like to thank you as I have just added it to my birth plan.

My dd1 had one - she went down the growth charts and I switched to ff when she was 5 mo. They picked up on her tongue tie when she was about a month old (IIRC) but never did anything about it.

She was really ill just before she was 3yo and the tie became ulcerated and it separated significantly.

I really wish she had it snipped while she was a tiny baby.

My daughter was tongue tied and I found breast feeding very hard, but after about 5 days we discovered and had her snipped. The midwife who delivered her was so apologetic about not noticing.

But people were really surprised when i suggested my son might be tongue tied when he was born. What a surprise he was. Then we had a complete palaver about having him snipped as they only do a clinic once a fortnight in my town. I was adamant that it needed to be dealt with straight away and amazingly got an appointment the next day.

I will insist on checking properly for no.3 who's due in Sept.

This is checked automatically at our maternity hospital. My eldest had a slight tongue tie and the paed said the hospital was quite happy to snip it while we were there but he said it probably wasn't worth it. So we got all sanctimonious about unnecessary cosmetic snipping and didn't do it. BFing lasted a week of agony.

Wasn't til I was pg again that I found out that even a slight tongue-tie can make BFing extra painful but by then there was no way I was even going to try BFing.

3rd baby I did BF and got them to doublecheck but he was fine.

I am glad to have perused this thread today. DD had a tongue tie. It was spotted at birth, but nothing was done, and then I had to fight my midwife team hard to get anything done, as dd was gaining weight ok - didn't seem to bother them that I was in agony, bleeding, and feeding her constantly - and therefore clearly at risk of giving up the bf. Fortunately once I stropped and got hold of the number for the lactation consultant we were at the hospital within hours and the snip was done there and then. One drop of blood, a tiny cry, then straight on the breast and it was onwards and upwards from there. But I know not everyone is a stubborn as I am...

I am now expecting no2, and hadn't realised it was genetic, so I will definitely be talking about this with my midwife to make sure it is checked (and dealt with) straight away.

I also think it's important to understand the longer term effects of tongue -tie: it can affect speech; and think of all the things a person can't do if they can't stick out and move their tongue properly (like, lick an ice cream), so it's not all about the feeding, and certainly not cosmetic.

My baby had a posterior tongue tie which was spotted by a lactation consultant (apparently quite far back and difficult to see). I had a nightmare for weeks. Then it was snipped by Mervyn Griffiths at Southampton Hospital

Yep, Southampton was where I was too. The paed was really disapproving of the hospital's keenness on snipping though, like it was purely cosmetic.

Haven't read all the thread yet as am posting quickly, but I am a Doula and the first thing I do when I get a look at the new baby is check for tongue tie, I've had 5 and 2 completely missed by HP's on discharge, now I mention it as soon as I look if it's obvious.

Not my job, but at least parents'll get help if they know about it.

three years on and I am still fuming that Mervyn Griffiths at Southampton wouldn't see us. He told me if ds had a problem with lumpy food at 6 months he would consider it a problem.

My gp, (who's normally great), disapproved of us getting DS2s tongue tie snipped as I was managing to hang on in there breastfeeding and he was gaining weight. We were stubborn and stuck to our guns. I'm so glad we did. The procedure is so small and seemed painless. DS2 didn't cry at all. I think he liked being swaddled and cuddled while it was done. I have friends who are speech therapists and dental hygeinists who say definitely get it done. I've also spoken to mums who were told to wait who have regretted it. I met one mum whos son had really suffered during weaning because he couldn't manage lumps.

Thank you Eccentrica for pointing out that some cases are, in fact, difficult to spot. But the consensus seems to be that TT is not taken seriously enough. I am considering making a fuss about this - might point it out to La Leche and the Natural Childbirth people. The parents don't want to complain to the hospital, though. I haven't dared ask whether she is now BF - it's too much of an emotive subject. Whatever they're doing, baby is fine now, judging by the photos.

what i don't understand is why the paed who checks babies at birth for cleft palate doesn't have a look at the tongue while they're at it... my dd2's tongue tie was spotted by the community midwife on day 4, but even then it took another 3 weeks of processes and paperwork to get the snip done at our local hospital. if it hadn't been my second no way i'd have persevered with bfing!

now i check all my friends' babies mouths when i go visit them

I struggled to BF my first and second child but got there in the end and fed them both for 9 months, with my 3rd I struggled too but it never got better, we must have seen 10 health professionals before anyone diagnosed tongue tie. By this point (2 wks old) the damage I had was so bad I was using nipple shields but baby's weight was dropping. I started to express instead but my supply was low due to all the problems so I had no option but to top up. Had the procedure at King's, sadly, it didn't seem to make that much difference and BF was still horrifically painful. (Mine was the only baby out of 20 seen that day not to be able to feed successfully post procedure). After 2 hours of various women ramming my boob into baby's mouth they looked at my nipples and decided I couldn't try to feed for another 10 days as damage so bad so had to express but as supply so low I have had to top up and am now predominantly bottle feeding with 2 expressed feeds per day. I am really sad about this as I always wanted to BF but with two other children (4 & 18 months) I couldn't keep attempting it.
I believe strongly that if someone had looked for it on day 1 everything would have been ok, instead I went to hell and back and everyone said I was doing it right even though I kept saying something was wrong. Awareness of this should be raised. Any first time mothers would have no idea of how comfortable BF'ing can be.
Also, bottle feeding is so stigmatised, at my local John Lewis the bottle feeding mothers have to go in a separate bit to breast feeders and it's practically in the corridor. So offensive as if bottle feeding is a bad thing to do!

I'll never know now, but it might have been why I found BFing DS so incredibly painful and gave it up after 3 days.

No one ever bothered to check.

My DD had it, not spotted until 3wks after LC came round to help with agony and constant feeding whilst DD was loosing weight

My dd is tongue tied, a midwife did pick it up at the hospital, she didn't think to tell me, I read it in the notes when I went home. DD feeds fine, I think that sometimes a more sever tongue tie is easier than less prominant.

It is woeful that it isn't looked for when people have difficulties bfing. Bfing support generally is tragic imo.

Can't believe they section off bottle feeders at John Lewis! That's outragious.

I was told it is a standard part of the paed. check. But attitudes to it vary by area. I fought tooth and nail to get a referral in Tayside, and finally did at 3 weeks - not that the midwives, health visitors, or paediatrician were in the slightest bit interested despite agonising pain breasfeeding. When I got to the Sick Kids in Edinburgh I found midwives there refer babies so routinely for TT division that they even do it for mums who are bottlefeeding. Gordon McKinlay does it there, and his registrar. For anyone living in Scotland, he is very respected and now the president of the British Association of Paediatric Surgeons and a great surgeon to get.

I took up the bad attitude in Tayside with another, more helpful and sympathetic paediatrician and he said he was going to raise it with the midwives.

There is an article explains that attitudes to TT lag far behind attitudes to bf. here.

Also, a mild tongue tie can produce worse pain that a bad tongue tie - see Jack Newman on this and the pictures and text here.

Good practice is to check at birth, I do it as part of the 'top to toe' check as soon as the baby is born. We check the palate and for tongue tie. But that's not to say it can't still be missed, I know of at least one I missed who was diagnosed a few days later. Sometimes babies will feed well initially so the problem doesn't show for a while, and sometimes babies just don't oblige with the appropriate mouth opening behaviour when you are checking and you think it looks fine!

It should absolutely be checked for routinely at birth, and not just visually, but also manually.

My DH has a tonguetie and I am aware that there is a hereditary link so as soon as my son was born I asked them to check.
MW1 - no
MW2 - no
MW3 - possibly but no
BF expert - (using her fingers) - yes, partial.
No wonder it was so hard to feed him!
No referral at that point (36hrs old) but they said see how it goes and the bfing expert did manage to get DS to latch on. It was like having razorblades sucked through my nips though, hardly a fun experience! And it used to take 2 hours per feed.

The visiting MW a week later asked to see me feed, asked about how it was going, and agreed that the tonguetie might be causing a problem so referred me to Paeds the following week.

The paed looked at it, felt it, said it was fairly insignificant as a tongue tie goes BUT! He said that sometimes what seems to be insignificant can have a huge improvement after separation; and what seems to be a really severe case can have little to no improvement after separation. And did I want to do it because he would do it if I said yes, even though he thought perhaps it would make next to no difference.

I said do it anyway, quick as anything, DS didn't even make a sound, I had to feed him straight away and over the next few days the difference became pretty apparent!

Still feeding at 19mo, which I can 100% guarantee I wouldn't be doing if it had continued to hurt as much and take as long to feed him for much longer than it did.

I should add as well that a friend of mine had a DS who had a "missed" tongue tie - she had a nightmare feeding him and stopped after a few weeks. No one really noticed until he was 2.5, when I was being Bad and teaching him to stick out his tongue - and he couldn't. His tongue tie was quite bad so they decided to have it separated when he was 3 because it was affecting his speech - general anaesthetic and pretty sore for several days - they REALLY wish they had known about it when he was a tiny baby.

that is really useful info about how a 'minor' tie can actually cause more bf problems than a severe one. I have added to my favourites just in case I need ammo come the arrival of no 2. DD's tie was a thin one, which contributed, along with her normal weight gain, to my midwives' ambivalence. They even watched me breastfeed, witnessed the contortions my face was forced into by the indescribable pain (though you described it very well thumbwitch), and said, 'oh yes, it can be like that'. It surprised me, because they are a very forward thinking team, very pro home birth, very supportive of bf in every other way. I just don't think midwives can be trained well enough in the problem.

one of the other interesting bits of info that I got from my visiting MW was that she was actually trained to separate tongueties, but in my area (NW Surrey) the paeds wouldn't allow them to do it, it had to be done by a paed. (That might be just my hospital, not the whole area)

A cranial osteopath friend of mine said that any babies she treated in her clinic in Farnham who had tonguetie were having to be referred to have it done privately because their local hospital refuses to do it at all.

I find this incomprehensible - it took a drop of sugar water, a swab of novocaine and a pair of surgical scissors - 2 mins for the actual job, 15 mins for the whole appt. It's hardly going to break the NHS bank to allow it to be done, and if they are so keen on the "breast is best" campaign, then they ALL ought to get behind it so that women don't have to go through needless agony and give up sooner than they would like to.

GRRRR!

(rant over)

I was tongue-tied (must find out if Mum had trouble breastfeeding), had minor speech problems through primary school & was finally diagnosed by an elocution teacher at age 11. Overnight stay in hospital with general anaesthetic, a couple of days with a sore throat & then I had elocution lessons for a while to get my speech sorted.

It definitely hasn't ruined my life but I still think it's ridiculous that no-one picked it up earlier.

ahh, this is one of my pet subjects. not had time to read all posts, sorry. terrible for your DIL, OP, but the reasons it was not picked up earlier are, i think

1. tongue tie can sometimes be difficult to see
2. some HCP may not know of the link between TT and difficult bf (so they may see it, but not know the significance)
3. they may know that some think there is a link, but not actually believe themselves that TT causes difficulties with bf
4. most doctors think that formula feeding is as good as bf, so rather than sort out bf they may advise to ff, and think problem solved.

I had to fight every one of these steps to get my ds1 tt snipped. I directly asked MW at day 1 if ds had TT and she said 'definitely not, you are just worried as you are a first time mum and a doctor, you are just looking for something to be wrong'.

My FIL is a dental professor and he didn't spot it. A bf supporter eventually confirmed my suspicions. I ended up begging one of FIL colleagues to do it, as despite phoning lots of private hospitals and surgeons, no-one else would do it. my arguement was, well. it might help, and it is unlikely to do harm (the southampton team have published on this).

I think it should be done at birth, and it is terrible it is not. Any day of painful bf is a day too many as the solution is so easy.

it's upsetting to hear such stories and experiences when the solution is so easy.
i wanted to give the other point of view though. my niece was a day old, they were having problems with bfing and it was picked up on there and then and snipped there and then. why they can't check in every hospital i don't understand, but some do respond quicker.