Guest post: 'My baby had tongue-tie - so why was I left feeling like I'd failed?'

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My daughter was blue when she was born - premature, blue and grunting. Although they sounded very sweet, the kitten-like noises she made were because her lungs were struggling. I'd scarcely had a chance to say hello when she was whisked off to the SCBU. When I saw her again a few hours later, she had a nasogastric tube, an IV drip and a pulse monitor attached to her.

I tried to breastfeed her, but felt all clumsy; she was tiny, her mouth seemed so small, and we couldn't get it quite right. I was given a breastpump and I expressed a few millilitres of what everybody helpfully referred to as ‘liquid gold’, dripped into her via the nose tube. She kept unlatching. I thought it was the nose tube causing her discomfort, or me holding her wrong as I tried to avoid contact with my c-section scar - I was sure it was all my fault.

Feeding became very stressful. I was constantly frustrated – we always seemed so close, but just missed getting it right. We were kept in hospital as she was a little jaundiced and my heartbeat was erratic, but also because I didn't feel confident with breastfeeding. People came and went, fiddling with my boobs and showing me different holds, but nothing worked. I'd had a caesarean, and was then separated from her for the first few days of her life - I already felt as if I had failed her somehow, so breastfeeding became even more important to me. I felt like I could do nothing right, and this sense threatened at times to engulf me.

One day, whilst advising me on positioning for breastfeeding, a lactation advisor said something about a tongue-tie. I had no idea what she meant. At that point my baby started to cry, and we didn't have a chance to continue the conversation.

A few days later, on my slow shuffle back from dripping my precious pumped milk down through the nose tube, I saw the very first midwife I'd met when I was pregnant. She was delighted to meet my girl and asked how I was getting on, so I told her about the breastfeeding problems. She looked into my daughter's mouth and sure enough, she found that Hope had a tongue-tie. The little bit of skin under the tongue that joins it to the palette was too tight towards the back of the tongue, meaning the tongue was sitting high in her mouth, which is why she could only suck in a very shallow way.

It was a huge relief to understand what the problem was, but there was nothing our hospital could do. We had to travel to a different hospital over an hour away with my 16-day-old baby to get help. The consultant confirmed that our daughter had a posterior tongue-tie and offered to snip it there and then. The procedure took all of 10 seconds, and I think caused me more angst than it did my daughter. I sat in the hospital cubicle topless, while my husband went to hold the baby as the tongue-tie was severed. I heard a very brief cry - it made me cry too - and then she was carried in, looking like a small, bloodied vampire. I put her to my breast and immediately she started feeding.

She nursed voraciously for 20 minutes, the antiseptic qualities of breastmilk starting to heal the very small wound, and then she slept all the way home. I was so relieved - but why had I been left to feel like Hope's problems with feeding were down to me? And what would have happened had I not spent time with the lactation advisor who first mentioned tongue-tie? And, having just given birth, why did I have to go to a different hospital?

As with most things, it was down to funding. And perceived ‘lack of evidence’ as to whether posterior tongue-ties really do have an effect on breastfeeding (or, for example, language development). It was only when I began speaking to friends about it that I realised how many of them had been through similar experiences. Some had reluctantly given up on breastfeeding, and some – those who could afford it – had gone private to get the tongue-tie treated, or they had taken a long journey to another NHS hospital. All of them, like me, had had no idea what a tongue-tie was until the moment their newborn was diagnosed with one.

I firmly believe that tongue-tie should be highlighted in all antenatal classes. We were incredibly lucky to have such a diligent and knowledgeable midwife, who was willing to discuss something the hospital she worked in didn't recognise as an issue. Without her support, our breastfeeding journey would have failed before it started – and my daughter and I would have missed out on the joy that nursing has given us.

#TongueTieHour is a space for parents and other people to share experiences and discuss tongue-tie and lip-tie, every Monday (from September 2) between 3pm and 4pm. It is organised by Tongue-Tie UK, which raises awareness about tongue-tie and lip-tie.

My son born on 23/06/14 had tongue tie too and for first week of his life screamed as so hungry as couldn't latch - various midwives and breast feeding consultants told me the tie was there but didn't do anything about it instead kept trying to force my baby onto my breast which just made him angry and we both got very stressed at feeds!! We came home at day 4 altho he still wasn't latching so I had to top up with formula - it took a phone call to midwives at a birthing centre by me and HV and me insisting on a clinic appt that we eventually saw a specialist midwive who cut his tie in 5 seconds!! Unfortunately by this point my boy was nearly 3wks old and altho would latch I couldn't get my milk supply going so we had to decide to switch to bottle only feeding. Very disappointing after a traumatic labour ending in an emergency csection so felt nothing went the way I hoped!!!
Why can't tongue tie be part of the babies first check or day one medical?? Surely as it effects feeding etc all midwives should be able to deal with it?? It's crazy and so much unnecessary stress for new mums which just isn't fair xx

I never had it in my head I wouldn't bf, when ds was born by elcs,
first day I tried to get him to latch, and had to hand express and syringe feed, he used to shake his head every time I tried to latch him on, I ended up having to cup feed him formula while sobbing at 4 am
Next day was the same and I was man handled by every nurse and shouted at for not being able to do it and I would give my baby jaundice. I actually threw a nurse out my room.
Later that day he fed for about 2 hrs straight and I thought We had cracked it.
When home I had bleeding nipples, mastitis ,crying at every feed and eventually started expressing for him as I was actually terrified of feeding as it was so painful.
Not one medical professional checked for a tt.
Eventually I had to switch to ff due to my medical issues.
And asked for a referral at 9 months as I thought he had a TT.
Ds does,he has a very unusual tie under his tongue and one at his top lip that the dentist that diagnosed him said he has no idea how this wasn't picked up or how I managed to feed him at all. Nothing can be done about the top one till his adult teeth come in and the bottom one shouldn't effect his speech, but If it does and need to be snipped he will have to be over 3 and go under GA.
I still feel guilty about ff and felt like a failure. If this had been picked in the hospital rather than screaming at me for starving my baby, maybe the first few weeks wouldn't have been so horrible.
The only bonus to come out of this is that the dentist has agreed that if we get dc2, I can phone him and be seen ASAP to check as the TT, could be hereditary, and I will know what I'm looking for.

Oh I had so much trouble with this with my DS. He was my first and they put so much pressure in me to stay in hospital until he could feed but he couldn't latch unless one of the midwifes held my boob and squeezed it. It was just horrible. He just couldn't feed at all and screamed and arched his back every time he went near my boobs. In the end I gave him formula just so I could go home.

I probably would have given up if it hadn't been for my mum. She said she'd had no support trying to feed me so she wasn't going to let me be left in the same boat, she contacted a lactation consultant who came out after I left hospital and diagnosed a tongue tie straight away.

I can't believe no one at the hospital even mentioned it to me when they knew I couldn't feed him. I'd never heard of it before.

Putting it on the birth plan is a great idea longtalljosie I'll definitely do that if I have another baby.

Wow. I thought it was just me.

DS went onto formula at 10 days old. By that point I had been expressing and using nipple shields for 5 days. My left breast looked like it was covered in a rash, and my GP said it wasn't mastitis, but due to the suction of my breast pump. DS developed jaundice in hospital and I was told to feed through it. I tried, and tried, and tried. He was obviously taking something as the jaundice disappeared after 2 days, but by that point I was dreading every feed.

One MW asked how much pain I was in. I said lots, she mentioned TT and I absolutely hounded everyone else who came into our room. None of them knew anything about TT, and anyway, they said, he's obviously feeding. They all believed the pain was only at the very beginning. It wasn't! It was for the duration of a feed, which could be up to an hour long. At my wits end I called LLL and they basically gave me permission to use formula.

I cannot believe that pediatricians and midwives are not routinely trained in diagnosing the various types of TT. DS has a slight fork to the tip of his tongue, which also dips downwards when he cries. He is now 18 months and I suspect he has a slight lip tie too.

All I can do is wait to see if he develops any kind of speech impediment (we're still at the babbling shouty stage) and put TT check in my birth plan when I have my next child. I fully intend to pay a private lactation consultant to diagnose any future DC the moment I suspect it's an issue. I will not go through that hell again.

Surely there must, by now, be a campaign on this?

My DD never latched on. MW said she wasn't tongue tied just couldn't stick her tongue out...

I expressed for a while then moved to FF.

She's now 4 and has had speech issues - a stammer and major pronunciation problems. I am awaiting a referral for having the TT looked into again, on NHS at C & W. Anyone any experience of this?

We were checked for tongue tie and told it was fine.
It was only my lovely independent midwife who saw it was posterior tongue tie which is often missed. NHS wait 4 weeks (yeah right!) so we went private, had it snipped and it was happy days after that.

I was so close to giving up feeding as I was dreading every feed, we would both cry and it would take an hour to get her to latch on. Had I not had that support (Neighbourhood midwives in case anyone is interested) and a daily visit there is no way we would have ended up breastfeeding for 6 months. Why the government spends all this money on campaigns is beyond me, everyone KNOWS its best, we just want help to do it dammit.
The breastfeeding specialist midwife at St Thomas's was on long term sick leave and the array of midwives and helpers that all had a go did more harm than good.

My baby had a tongue tie - various midwives and even a doctor looked at it and said it was only slight and definitely not the cause of the pain I had feeding... One breastfeeding specialist nurse made a referral over the head of the doctor, we went to the tongue tie clinic at the Children's Hospital & they instantly diagnosed it and made a cut. Without that help I don't think I would have made 6 weeks of breastfeeding let alone 6 months!

My baby had tongue tie - he had latched on once but I was feeding him formula and expressed bm at the hospital.

I was in hospital for nearly a week, never got to see a breastfeeding MW, although the MW did spend some time with me when I was in HDU after an emcs. I was busy googling how to get a good latch etc and came across material on tongue tie. I had a look, did the things they said would show whether he might have tongue tie and I thought he might have that. I asked a MW, she said no.

Trying to feed him wasn't painful, just after one time he just would not latch on.

I went to some local breast feeding cafe and after a home visits the lady there thought that he might have tongue tie, I had to get a second lady at the breastfeeding cafe to confirm and got referred to the clinic at Kings and it was snipped within the week.

He latched on as soon as he was snipped, having been fed a combination a bm and formula for 4 weeks. But we persevered and we soon dropped the top ups and he was exclusively breastfed until 6 months.

I've written to my MP about what happened to me and the lack of training for midwives and I get very angry at the stress and distress that I was put through because of the ignorance of the medical professionals around me. He wrote to the department of health on my behalf and they suggested I get in contact with, I forget who exactly, but so e sort of health training council.

I am also pretty sure that undiagnosed and misdiagnosed tongue tie is responsible for so many women having such a hard time breastfeeding and feeling they have no choice but to go on to formula - after all, you need to feed your baby...

I still remember sitting there in floods of tears feeding my son with a bottle - even after the terrible labour, birth, haemorrhage and tachycardia none of that was as bad as not being able to feed my baby because he had tongue tie.

I had a similar experience, but sadly it wasn't diagnosed until my LO was almost 3 months, by which time I had multiple mastitis, thrush, etc etc. It was a horrible horrible experience.

Dear arizona1, sorry to hear you had such a poor time breastfeeding. :-( Maybe that would have been less so, if you'd had some timely quality breastfeeding assistance.

AlpacaMyBags : were these lactation consultants as in IBCLCs or something else do you know?

I'm asking that, as most peer supporters wouldn't have TT in what we call their 'scope of practice' (SOP) and ought to have referred you on through the TT pathway locally, assuming there was one.

Some, less visible ties only come to light after feeding issues have arisen, or other symptoms, so making it part of newborn check could be counterproductive, if the tie isn't yet 'making itself known', and by that last bit....

...I'm referencing NHS literature now e.g. www.pat.nhs.uk/downloads/patient-information-leaflets/maternity/after-birth/220%20What%20is%20tongue%20tie.pdf from the Pennine Acute Hospitals NHS Trust literature.

collette0409 : that's tragic, I'm so sorry that happened to you. Although MW's aren't BF specialists, I don't think it's beyond their SOP to assess correctly for TT. It's fairly normal for you to carry this trauma, and when you get an opportunity I would feedback through the system either by writing or calling. All hospitals have PALS: www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68 which is a way to get your voice heard. I just went through this for another issue locally, by phone and after several false starts, our problem was remedied, everyone in the case history was writtten to and it was going to be integrated into new training (this was from the head of one of the children's depts in the borough).

In addition ATTE: advocates for tongue tie education, a U.S. based parents led organisation that Tongue-Tie UK has links with, has got resources for follow up and feedback with HCPs. www.tongue-tie-education.com/write-a-letter.html Although these are for the U.S. context you can adapt them, and we are working on our own which we hope to upload to our website : tonguetieuk.org/

Kandboys this is exactly what we mean when we say that TT, as a is NOT restricted merely to breastfeeding. In the US it is actually coded by the CDC as one of several "Congenital Anomalies of Upper Alimentary Tract". UK trained (although no Aussi based speech pathologist, and 'star' of the TT world, Carmen Fernando has a groundbreaking book Tongue-tie from Confusion to Clarity: www.tonguetie.net/ and great resources on her website. It is strongly advised to parents of children with TT, especilly with speech or swallowing issues. It helped us enormously. DS was in SALT too.

Kyliem999 so glad that Kings could help you in time. The fact that so many professionals who ought to have had sufficiently up to date training in assessment, failed you is shocking, although not uncommon. :-(

TeenageMutantNinjaTurtle we're really sorry that opportunity was stolen from you by incompetent HCPs and it is an unacceptable level of care. We hope that one day, this sort of horror story will be a thing of the past. Sadly it will continue for a while to come, we hope to be part of some real change though, at Tongue-tie UK.

I'm wondering, could people want to submit these stories to us (it can be 1st name or anon), as indicated here: tonguetieuk.org/your-story/ so that decision-makers can begin to understand the scale and extent of the unnecessary suffering, and also to help us garner support for our ongoing awareness work.

We'll keep reading and responding to these stories, as it's a real tidal wave of experience that Ellie's article has unleashed, and we don't want to miss it.

Thanks to Ellie for taking on this guest blog, and for sharing so beautifully, her own family's experience.

I've had a similar horrendous experiance with both upper lip tie and posterior tongue tie. Dd's had 4 bouts of thrush in 12 weeks. Although we didn't present all of the symptoms she made the clicking sound as she fed and continues to suffer with wind. I spotted it after looking at photos online then pushed for it to be looked at again by the lactation consultant and HV, who initially said there was nothing wrong. By which time it was too late to refer her to have it snipped because she was nearly 3 months.

It turns out that Dd2.11 has both upper lip and posterior tongue tie too as do I. And I'm convinced if it wasn't for my fast let down I wouldn't have managed to muddle through for as long as I did have.

Dd is four months now and we still have feeds where she's frustrated and hungry at the nipple because she can't latch properly and she also can't maintain the latch on a bottle either or I would have given up breastfeeding all together.

All in all breastfeeding second time round hasn't been as enjoyable as with Dd1 and I find myself counting down the weeks till I can stop breastfeeding and give her a sippy cup. Surely the cost of snipping ties at birth is pretty low compared to the cost of rectifying dental or speech issues further down the line. I feel completely let down. And agree lip and tongue ties should be routinely checked at birth.

Your story is almost identical to mine with DC3. Luckily as DC1 had had a tongue tie I knew what to look for and basically told SCBU I wasn't leaving til it was cut! I was very assertive about it.
DC1 however got cut on Day 6 after an hour's drive to the nearest place that would cut it. And it was only discovered because the midwife who happened to do my home visit was a Lactation Specialist. Luck should not play a part in it getting cut. And they should be cut at birth (or ASAP thereafter) IMHO. There is nothing to lose by cutting it but lots to gain.

My dd is 5 days old and after 2 days of not being able to latch on in hospital I asked the midwife to check for tongue tie. She sent a paediatrician who said she thought it was fine but she'd get her senior to check. She also thought it was fine and we were discharged.

At home feeding became really sore and it was only pure luck that the midwife who came for an extra home visit had a bit more experience. She asked me to come to the hospital the next day to see a different midwife who is a feeding specialist.
She instantly picked it up and we're paying for it to be cut privately tomorrow.
It seems that it's down to luck as to whether or not it will be detected. Even if it is picked up the only options here are to wait 6 weeks for a gp referral or pay to get it done privately. Luckily we can pay, but not everyone will be able and it makes me sad to think that there might be others struggling who can't afford help.

My son was born in feb 2013. The dr did notice his tongue tie on first examination but said if i was managing breast feeding ok to carry on. I then asked midwives throughout the night to help me with breast feeding as i felt something wasn't right. My baby just didn't seem settled. I was reassured and discharged. What followed was two weeks of hell. No sleep due to an unsatisfied hungry baby that wanted to feed for 24hr as he couldn't always latch to my nipple or maintain the latch. Then came breaking point and a 2am dash to the shop in search of milk and bottles. He managed bottles fine but i felt like i had failed. Then once on solids we noticed he would consistently vomit if anything caused him to gag and i became worried regarding his speech. I felt bad that he couldn't stick his tongue out. Finally at 11 months and with no anaesthetic he had the snip. He was so brave. Lesson learnt. Next baby- if tongue tie get it snipped asap!!!

I think they should check for and treat tongue tie at birth.

Ds2 had tongue tie. He could never latch properly, when he did latch, it was shallow and he didn't create a vacuum so he was constantly clicking and dribbling milk during a feed. Each feed used to last about one to two hours too. And the pain it caused me was so bad I couldn't talk through it. I used to cry, swear and shout during every feed. It was horrendous.

The only reason I persisted was because I bf ds1 and I knew we had a problem that should be fixable. I Googled pictures of babies with tt and I could clearly tell ds had one. But the midwives I saw either told me I was wrong, told me he did have tt but it was too mild to affect feeding, and one told me he only had tt when he cried

I fought every day for a referral to the local specialist and eventually got one. He saw me the same day and snipped ds's tongue tie within 30 seconds of telling me he clearly has one. Feeding him after that seemed to get magically better!

He's almost 4 months old now and feeds like a pro.

I really do think health professionals don't know enough about tt. If you Google some photos and use mn, you're more qualified to diagnose tongue tie than they are IMO.

I was told in the antenatal breastfeeding classes that tongue-tie won't affect breastfeeding... Well, it did.

I was in hospital for quite a few days, and I knew there was a problem. Got some help for latching from midwives, but it was still difficult and she had to be formula-fed. Eventually got a paediatrician to check my daughter, who then called a lactation consultant to help me, who then referred my daughter to get the tongue-tie snipped. I was in hospital for a long time and very pushy - had I not been, it would never have been diagnosed. I do think it needs to be made a compulsory check, especially if a mother complains about bfeeding problems!

Don't miss #TongueTieHour back today 1st Sept 3-4pm (BST) on Twitter. (in just under an hour!) Details of how to take part: tonguetieuk.org/what-is-tonguetiehour-twitterchat/ … see you there!