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?

yep, you are absolutely right, they should.

Does anyone know what happens if the tongue tie is diagnosed in the hospital - can it be fixed before leaving?
DD had this and am sure this is why bf failed - we discovered too late. All DH's family have this, so it's pretty likely that dc2 will as well.

it is a simple proceedure, they snip it.

i think it depends on how severe teh tongue tie is tbh and i am not an expert.

Mouths are checked, or at least should be. Has your granddaughter's parents asked why it wasn't picked up? I'm not sure 'it was a difficult case to spot' is a stupid excuse. It is a reason why it wasn't spotted. I think I'd want to know why for 12 days her mum had to struggle with feeding that wasn't working and why she wasn't supported better.

If tongue tie is diagnosed in a hospital before leaving it will be referred to the specialist either in that hospital or the nearest one and snipped as soon as possible.

I completely agree. I volunteer in a bf clinic and I am stunned how often we see mums struggling to bf in great pain and the second the baby opens their mouth it is completely obvious what the problem is - and not all of us have even been fully trained to recognise tongue-tie. Sometimes the mum has never even heard of it.

In our area (North London) a lactation consultant does the snip at a local hospital and the baby feeds immediately afterwards. It's pretty straightforward.

I've not heard of it being done at birth but I did hear of someone who took a newborn into A and E and refused to budge until it was done.

Theowl - where are you? Might be worth ringing around now and finding out what resources are local to you. There may well be a local doctor or LC who could sort you out immediately.

To be fair to the hospital staff occasionally there are forms of tongue-tie that may not be immediately obvious and can develop after a couple of weeks as the baby goes. But in the vast majority of cases staff just don't look for it or know what they are looking for. I can only imagine it comes from a time when breastfeeding rates were so low that it was less of a consideration. Although I also know of bottle-feeding mums who have chosen to have the snip done so as to prevent difficulties with speech later on.

Oddly enough I only learned about tongue tie recently. looked closely at DD1s mouth and while it's not bad at all she definately has a bit of one. She can't stick her tongue out. She's 13! Went on to talk to my sister about it and realised that she too has one, even worse. She's 31!! (but breastfeeding wasn't a problem which is why i didn't notice i think. just thought she was odd because she eats icecreams oddly)

I picked up ds's tongue tie in the hospital even though he was checked over by a paediatrician. When I asked for a referral to Mervyn Griffiths (expert) in Southampton he refused to snip it as at the time as bf was going okay. In hindsight I should have insisted that it be snipped as we had problems later on. Thankfully his speech is okay.

My DS was born slightly tongue tied and the paediatrician did pick it up in the hospital. It was only mild so they didn't do anything about it, and it didn't cause any problems with breastfeeding. He's got a bit of a speech impediment (again, not a serious one) because of it, and he really can't stick his tongue out at all. But otherwise it's been fine.

I thought it was standard practice to check for this in the hospital, but things change a lot in 9 years.

Ds1(9) was slightly tonguetied but it wasn't picked up until he was 2 when his speech was still really unclear. By the time they could snip it he was 3 and had to have a ga to get it done. He bf absolutely fine but it really did affect his speech. It would seem not all places routinely check, the gp saw it instantly. I would much rather have had the option of having it snipped as a newborn without all the risks of a ga.

Agree completely. I had dreadful problems BFing DS and he lost more than 10% of weight in the first few days. I suspected from 3 weeks old that he had a tongue tie but was fobbed off by HVs and GP repeatedly. I finally managed to get an appointment with a BF counsellor who watched him feed for about a minute and immediately picked up on it. But by the time all this had happened and we'd been referred to get it treated he was 3.5 months old (which is a long time to BF for in agony, believe me). Apparently 1 in 10 babies are born with some degree of TT, which makes me wonder how many other people weren't lucky enough/persistent enough to get it diagnosed and had to stop BFing.

If/when I have another DC, I'll not be leaving the hospital until they've been checked!

DS had TT diagnosed at three days when I went into a BF clinic and shouted until someone checked. Why they cant add 30 seconds at the birth checks is beyond me.
I do remember someone saying that they dont like to do the snip until baby is a few days old but don't remember why. In the old days midwives used to just pinch it off with their fingernails.

tyota - it is disgusting! my son was born with a tongue tie and i had days of him trying to breast feed and constant screaming as he was getting so frustrated that he couldnt. i had nurses galore trying to help - and not a single one of them checked. being a first time mum it didnt even cross my mind.

in the end we gave up and i put him on the bottle which didnt go to well to begin with, i thought it was me who was the failure. after a couple of weeks i noticed his tongue made a heart shape when he tried to stick it out so i mention it to our gp at the 6 weeks check. her response was as long as it is not interfering with his feeding its nothing to worry about, but clearly it did!!

i did my research and apparently me and my brother had one also but they both stretched and snapped when we were about 2.

at ds 9 month development check we got referrred to a specialist and he said if any treatment is to be done it is better its snipped at birth. if however it is not discovered until later on as in our case we have to wait until ds starts talking properly to see what action to take.

i have been told he has a very thick tongue tie and is unlikely to snap and if we decide to snip it in the future he could end up with a permanent lisp.

i am and that this was not picked up sooner by health professionals and i will make a point of ds2 due in september to being thoroughly checked over as soon as he is born.

i know how frustrated you feel and helpless.

I completely understand how you feel, although luckily my daughters was snipped on day 3.

It took 2 days of various midwives spending hours with me helping to latch her on, and only on day 3 did a different midwife suggest it could be the problem. What a waste of resources, as they spent a lot of time with me and I would have gone home earlier from hospital.

Luckily the doctor who completed the snips had a session on the following afternoon and she latched on beautifully afterwards. She is now over 3 months and still feeding well. To be honest I was so relieved it was all sorted at the time, however very frustrated that it had taken 2 days for someone to suggest it, especially when it was very common.

I questioned why it wasn't spotted earlier and apparently they no longer check for it at birth as they only complete the procedure if there are feeding problems which supposedly are spotted quickly!!

I hope she managed to breast feed after it was snipped.

DS1 partly tongue tied - identified at bf drop-in session

DS2 much more tongue tied identified by midwife approx 20 min after birth.

Both didn't latch on very well but thrived (bf for one yr). Both resolved without snipping although DS can't stick his tongue out so well. I'm keeping an eye on his speech (now 2)

Totally agree with you.

The hospital (North-West) failed to spot my dd's tongue tie, and I nearly gave up on breastfeeding, and ended up with bleeding nipplesand much distress as a result.

The two midwives who delivered her missed it, as did other midwives trying to help me latch her on while in hospital. The paediatrician on the ward missed it, and worst of all, the hospital infant feeding specialist didn't spot it after 30 mins spent trying to latch dd on.

In the end, I went to see an NCT breastfeeding specialist, when dd was six days old, who spotted it straightaway, and got her booked in for a snip at the Royal Oldham Hospital (the only one in the region to do the procedure). This happened quickly, at 10 days old.

After the snip, the pain breastfeeding was substantially reduced, and a week later had gone. DD is now 22 weeks old and still exclusively bf, and I intend to bf for a year now.

I've also found out that tongue tie can be genetic, and that her father has it, and on my side of the family, her auntie and her grandfather. Knowing this, surely midwives could at least check babies who have a history of tongue tie in their family, although as it only takes 2 seconds to spot, I don't see why they can't check every baby.

If there's anything I can do to save other women and babies from going through this in the future, I would like to.

My dd's tongue-tie was recognized at first attempt to feed. Not a bad tie but the risk of her lisping in later years worried me. We dithered for about 7 wks, then had it snipped. Breastfed her immediately but she was so used to the teat, hey ho.

You are right, I think it's appalling that the hospital didn't spot it, esp. after her losing so much weight and howling for milk. Did they not do any more checks? Just left her crying or what?? I'd be frothing at the mouth if that was my baby. I also feel for her mummy, what a terrible first experience, I hope she has now found good support.

Can any of you mums update me how your dcs with tongue tie are doing now? My dd (9mths) is very vocal and I'm still worried if I have to keep an eye out for her speech and what I can do to prevent any issues. Am very curious.

Just red your post FWF and yes, TT apparently is genetic. I suspect I have a slight one.

Great, DD looks like my husband but she has my tongue-tie...[grumble]

It was missed because until recently the prevalence of bottle feeding/low BF rate meant that tongue tie was a condition that often went unchecked (as it doesn't affect bottle feeding). With the resurgence of breast feeding, the significance and effects of tongue tie become more relevant again, however it's not on the radar for many HCPs: drs, paeds and MWs included. This is indicated in the fact that there are (I think) only two tongue tie clinics in the UK (and I was at one today and it was rammed), whereas years ago, MWs used to just snip them in the community.

Not an excuse...just an explanation.

Spillage - there are lots of places you can get TT dealt with outside of a specialist clinic. It varies a lot depending on where you live.
In some areas it is still dealt with by a midwife
www.salisbury.nhs.uk/informationforpatients/patientleaflets/obstetricsandgynaecology/divisionoftongu etieacnew062v11april2008.pdf

In other areas there is a specialist surgeon at a nearby hospital or a lactation consultant.

This list contains most of the main centres but is not exhaustive and doesn't include my local LC service for example:
www.babyfriendly.org.uk/page.asp?page=154

I can totally sympathise with you as sil's first baby had this and had awful probs bf. They didn't diagnose the prob until couple weeks aft birth though! She tried to express and use a bottle but gave up in the end, very sad as it is possible to bf with a tongue tied baby, you just need the right support and encouragement. Has your Daughter been to a bf group or phoned a peer supporter? If she reall wants to bf then she may still be able too. Obviously I realise that this isn't the point your most upset about, I just wanted you to know there's help out there.

Unfortunately the treatment for tongue tie varies in different parts of the country as usual. In our area they just leave it and if the child isn't speaking by age 3 they refer them to a cons! I think that's awful as it's such a simple procedure to cure it. Fortunately there is a local surgery where a Dr will offer this procedure privately, I don't think you should have to pay for this type of procedure though. Especially when the emphasis is on bf at the moment and it's clearly v difficult to bf a tongue tied baby.

I really think you should complain to the hospital. Considering what the possible outcome may have been. Complain, the hospital is legally obliged to reply within 48hrs. To be honest I'd also complain to the m/w as this should've been picked up easily by them when they did their daily checks as I'm sure your daughter would've mentioned the probs with bf. I really hope you take this further and get a good outcome.

I had an horrendous time trying to breastfeed DS who had tongue tie. Like others, midwives at hospital, community midwives and health visitors all missed it despite, what I know now, were classic signs.

DS wasn't snipped until about 4 weeks, it was so simple, he didn't even wake and I breastfed straight away after. It took him still a lot longer to improve his feeding and it was sheer guilt and stubborness that got me through despite bleeding nipples and extreme agony plus 1-2 hourly feeds.

OP - it should be checked at birth, I now add a reminder to check this to my congratulations to friends when they have had a baby.

It makes me sad to think how close I came to stopping feeding and how many others will have done due to the unnecessary pain suffered.

My niece has recently been to hell and back with this one.

DD feeding constantly from birth and not gaining weight so MW just said to put her on the bottle , LaLeche League counsellor indignant about that and said keep Bf, it'll come and HV a tad er... useless. Mum not happy as she was getting her weighed weekly and she had gained only ounces and was obvously underweight.She went for her 6 week check and the GP sent her to A&E immediately! DD had barely gone above her birth weight. Turned out she had a fairly pronounced tongue tie, which was snipped and, 2 months on, she's now doing fine. Phew!

What on earth were the MW's and HV playing at? I gather this isn't so uncommon and this baby obviously had a problem yet they were useless. Not a good experience with your first baby.

My son had a tongue tie. At birth he weighed 9lbs, by day 21 he weighed 7.5lbs. They even didn't let us out of hospital for over a week because they were concerned about his weight loss. Nobody noticed despite umpteen MW's, nurses and BF counsellors watching me feed him

I was so upset. It took the MW who visited the day after we finally got out of hospital to suggest tongue tie. So back to hospital we went to see the BF specialist nurse at the BF clinic (v.expensive taxi there and back as I'd had a c-sec and wasn't allowed to drive). Expert watched me feed my son and immediately referred us to Mr Griffiths at Southampton Hospital because they couldn't do it at my local hospital.

Two days later he'd had the tie cut (he didn't even wake up) and was feeding better.

It took him 9 weeks to regain birth weight though.

I wish there was a check at birth too.

I meant day 12, sorry

Completely agree with everyone. Why on earth isn't this checked for at birth? Both my boys were tongue tied. The first time it was spotted after a week and snipped v quickly and easily by a great midwife. The second time we spotted it ourselves and becuase the policy had changed we had to fight hard to have it snipped.