Guest post: 'My baby had tongue-tie - so why was I left feeling like I'd failed?'
When MN blogger Ellie Stoneley had baby Hope, she was left feeling guilty and inadequate after struggling to breastfeed. It was a chance encounter that led to Hope being diagnosed with tongue-tie, and here, Ellie asks why there is not more awareness and support around the condition.
Blogger and Tongue-Tie UK supporter
Posted on: Tue 26-Aug-14 12:52:36
(44 comments )
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.
I was so relieved - but why had I been left to feel like Hope's problems with feeding were down to me? And, having just given birth, why did I have to go to a different hospital?
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.
By Ellie Stoneley
Message withdrawn at poster's request.
It did used to be a newborn check - I was told that midwives used to have one long fingernail for the very purpose of cutting a tongue-tie discreetly - newborns don't feel it as their nervous system is not developed enough.
DD also had a tongue tie and also wouldn't feed properly - she had a high birth weight, but it stayed the same for the first 4 weeks during which she (tried to) feed almost constantly. We eventually got a referral to a hospital about 30 miles away to get her tongue tie snipped - and in a stroke of administrative genius we got the letter telling us when our appointment was about 2 hours before the actual appointment. Which, just to remind you, was 30 miles away. We made it in time and as Ellie says it took about 10 seconds to sort out, and DD was feeding again (properly at last) about 2 minutes later.
I expect the cost to the NHS of seeing the doctor a few times, of the forms being sent around, of the breastfeeding councillor (who gave us a bottle ...), of the letter being sent to us and of the time of the doctor we saw plus the sterilisation of his tools and so on was pretty significant compared to a midwife slipping a long fingernail under her tongue when she was born.
Ds2's tongue tie was seen at birth, it was severe and obvious. Despite this, it wasn't cut for 2 weeks as it had to be done by a consultant who was booked up. By then I had ragin mastitis and both of us cried every feed. J switched to formula two days later when I couldn't take it any more - awful or me, when is fed ds1 easily. I was very down about it or a very long time.
I'd like to add that tongue ties should be checked for and cut on the postnatal ward.
Sorry for millions of typos! The memory of that pain must have affected me
Feeding tongue tied ds2 was the worst pain I've ever felt, worse than giving birth to him and he was 9.10, back to back and pain relief free! I'll never forget it <shiver>
I had a similar experience - I got hours of help just to be told keep trying the pain will go, as she was lactating on perfect. But no one check once for tongue tie, not even after I ask at the hospital. The midwife that was checking her said she was fine. After two week I just seat there cry think I was a crap mum, could not feed my own baby.
When the Health Visitor came in, I already changed to bottle, HV check my daughter over and first think she said was "no wonder you where in so much pain, she has a bad tongue tie, why did they not snip it in the hospital". I just feel angry now and sad still.
My DS had a tongue tie - he too was jaundiced and he struggled to gain weight. Our local bf support group noticed it, and we paid privately to have it snipped. Instant lovely, weight gaining, content baby. I'm checking this next baby when they hand her to me lol, and DH has instructions to phone the lovely lady who did DS to book for her to come and snip straight away when we leave hospital if there's a tie there. I'm not going through two weeks of hell again for the sake of a quick snip!
My son was diagnosed with a tongue-tie and, because I was not breastfeeding him due to other issues, they would not cut it. We travelled to another hospital over an hour away just to be told they do nothing. He is now a couple of months off being 3 and he is speech delayed and under a speech and language therapist. Professionals maintain that it doesn't affect speech, I am adamant that it does. I can see him having to have it done in the future under general anaesthetic which terrifies me when he could have just had it done quickly and painlessly at an early age.
I have two teenage DDs and tried and failed to breastfeed each of them as newborns. They just couldn't latch on and I had to give up and formula feed. They are both fine and healthy now. It was only years later that I realised that neither of them could poke their tongues out, and obviously have tongue ties. I'd never heard of it when they were little, and nobody mentioned it.
Had a similar problem. My baby was born by c section and wouldnt latch on. I was aware of tongue tie as a friend had sent me a BBC news article when i was pregnant to make me aware it could be an issue. So when i was trying to collect single drops of colostrum in syringes i asked midwives and doctors if they could check - all said no tongue tie. Lactation consultant checked as well. Left hospital feeling so frustrated but wouldnt go to a bottle as wanted to keep trying so fed baby with cup and then a tube whilts attending weekly breast feeding support groups. For 5 weeks we struggled until finally we got a referal to kings college tongue tie clinic where they diagnosed a posterior tongue tie - i knew something wasnt right but you put your faith in 2 midwifes, 2 lactation consultants and 1 paedeatric doctor and no one would diagnose it! My baby had the tie snipped and fed instantly. I So wish they would get better at spotting this to save 5 weeks of frustration! Next time i would go privately straight away.
Similar story here- my daughter had tongue tie which was spotted on the maternity ward. I had to beg my midwife for a referral to get it snipped, as I had horribly cracked nipples and was sobbing in pain every time she fed. The operation was done at another hospital out of town, when she was about 10 days old. She fed much better after that and once I was healed feeding was fine. I was very surprised that there only seemed to be one midwife in my entire county that was qualified to correct tongue tie.
Another similar story here. Both daughters badly tongue tied. The first took 6 weeks to diagnose despite daily trips to hospital run and NCT Breastfeeding support groups. By the time we found a lactation consultant who diagnosed and snipped it, my will to continue had gone, i didn't really believe it would help and I couldn't face the pain and misery. My baby hadn't gained weight for a number of weeks and so I chose to switch to formula.
When my second daughter was born, we asked the midwife to check her tongue. No evidence of a tie, but three days later I had bleeding nipples and dreaded every feed. We saw the same lactation consultant who diagnosed and snipped it. Within 24 hours, feeding was pain free.
I'm still bitter about what we went through with my first daughter. I doubt I'll ever truly get over it. No one checked her for tongue tie until we spent a small fortune on a private consultant. Knowing now that I probably could have fed her just fine if we'd had the right information and support fills me with anger.
My DS is almost 3 and I could still scream about this. I was so determined to bf (DD I couldn't due to hypertension tablets I was on affected my milk). He latched beautifully, I had loads of milk but it soon collapsed into a world of screaming, failure to gain weight and a trip to the children's ward when he was 7 days old due to 'failure to thrive'. No one, no one at all, advised me or thought to check for tt.
It was finally confirmed by a random HV when DS was 7 months old ffs. I ened asked one mw and 1 doc in hospital was it tt and they both said no.
He fed badly with a bottle too.
I so so so wanted to bf him and it was taken away from me cos no one checked who had the knowledge.
DS seems fine now but has a lovely heart shaped tongue.
Gutted even now.
It's crazy. In Southampton they do it for free at an open clinic. Where my friend is she had to pay a lady to come and do it privately.
This makes me so sad. I meet ladies every day who say "I couldn't breastfeed". They could, it was their babies that couldn't, but the mums feel they have failed at something they could never have succeeded at without appropriate diagnosis and treatment.
Statistics state that only 5% of babies are tongue tied. As a breastfeeding supporter I'd say 50% or more of the families I see have tongue tied babies. It's hideously common.
Similar experience. I noticed it immediately - dh and his brother were both born with one so was on look out. Ds born without one, Dd had a 'snakes tongue' as it was being pulled back.
At first midwife refused to acknowledge it, then in discharge I was told they no longer cut them because it caused horrendous bleeding and was dangerous.
I'd breastfed my son for 10 months and it broke my heart I was failing to do the same for dd and I was also in complete agony .
Eventually a midwife got me an immediate referral and it was cut at 2 weeks by which time she was almost entirely on bottles and didn't like breast feeding. I also despised myself for 'failing' her and was falling into a hole of PND.
It basically ruined the whole first year of my life with dd. That sounds melodramatic but it really did devastate me.
I'm another with a similar experience, I'm still slightly(!) bitter now. My son was born 10.5 months ago and as I work in paediatrics albeit not a clinical capacity, when we had trouble breastfeeding I asked the (numerous) midwives and then an NCT bf counsellor to check for tongue tie. All peered into DS's mouth for all of 5 seconds and said no, you're the problem, you aren't holding him right.
I tried and tried and eventually 'failed' to bf him so I did the hardest thing I've ever had to do and exclusively expressed breast milk for 6 months. It took over my life and as a result I am now on medication for PND. I was an anxious wreck expecting my poor breast pump to break at any second (it wasn't for frequent use and I couldn't afford one that was).
When DS was 5 months old, I took him into work and one of my paediatric colleagues immediately asked if he had a tongue tie. They'd noticed the same thing as myself, that he had a slight fork in his tongue. So I took him to the GP and asked for him to be referred to paediatrics.
FOUR months later we were seen by a consultant who confirmed that there was evidence of a tongue tie which had severed itself over time and should have been snipped at the earliest opportunity. I was and still am angry that I went through everything I did all for the lack of funding/experience/whatever for such a small procedure could have resolved our bf issues.
It's about time this was made a standard check for newborns and I for one am going to make an enormous fuss if I even slightly suspect that any future babies I may have has a tongue tie.
Sorry for the rant
Thanks to MN, I knew all about tongue tie, and had it on my birth plan that I wanted it checked. I had an older midwife - close to retirement, and she did the check without me having to ask.
DD2's birth - just the same, asked for the check on the birth plan - younger midwives - couldn't even get them to open her mouth despite asking several times. I was repeatedly told it wasn't an issue.
Another one with a similar experience.
I'd read about tongue tie so when DD was born I asked one of the midwives to check her. I was told she was fine. 2 weeks later and dealing with agonising cracked nipples which left me sobbing at every feed I took myself along to a breast feeding support group where the lactation consultant instantly diagnosed a "thick posterior tongue tie". She wrote me a letter to give to my GP recommending a referral to have it snipped. I saw the GP (a male doctor if that makes any difference) who looked in DD's mouth, declared the tongue tie not bad enough to need snipping and refused to make a referral.
I went on to suffer 2 bouts of mastitis which turned into a breast abscess. By the time we found someone who could snip the tongue tie privately (DD was 6 weeks old at this point) I was at the end of my tether and, I strongly believe, teetering on the brink of PND. I gave up breast feeding a week later.
I strongly believe that all of my problems, the cracked nipples, mastitis, abscess, etc were attributable to the tongue tie and had it been identified and treated earlier I might have been able to continue breast feeding.
I've had three tt children, one without. The three with it, oldest one wasn't cut (because i had no idea and had never heard of tt when she was born) has speech problems.
The second child didn't have it, no speech delay or problems.
Third had his cut, but quite late on, (yes i remember the pain) he has mild speech issues, but is getting better..
I remember being told my oldest had a 'lazy tongue' by a speech therapist, i've now found out that a lot of the words she couldn't say was because her tongue couldn't reach her teeth.
Last baby had tt cut, twice. It's regrown. They won't cut it now despite her being bf, because she is 11 months old.
Bit too early to tell is she has speech problems.
So to all 'professionals' who make out it doesn't affect speech 'BALLS!'
That is all.
Sorry forgot to say, i don't judge anyone on how they choose to feed their baby, but i feel so sorry for bf mums who give up because of something so easily remedied.
I had trouble feeding dd2 and couldn't work it out as all seemed ok, but I was in agony every feed and she was pretty much constantly on there. Took a lactation consultant at local children's centre to notice posterior tie, then I got private midwife to come do snip, she had to do it twice! Had a bit if cranial osteopathy too, which was lovely but debatable if it was effective. By 8-10 weeks we were feeding beautifully. Gave a couple of formula feeds at the worst times about 4 weeks, but now we are at 9
Months and I am still breastfeeding, I feel very lucky that I got support and could afford to get private snip!
I breastfed DS for 6 months no probs. thank goodness- because it meant that when I had DD 2 years later I KNEW something wasn't right. It was agony. Total agony. And she would never stop feeding. And she made a weird clicking noise as she fed. Which I now know is a classic sign. One which is not mentioned in any of the 5 baby books I'd read (I know!)
At 12 days old she was diagnosed withTT. Local hospital would not snip it- had to wait 2 weeks for appointment 1 hour away. By which time I was mix feeding and ended up totally FF soon after. Snip was fine, feeding after the snip was fine but she got cross with BF and just wanted bottles. My milk supply by the time they snipped was dreadful. I was very upset.
DD 2 was born 4 years later. Straight after birth I asked about tongue tie. Yes- she had one. But the policy had changed- they would snip it, but the clinic had been that morning and is have to wait a week. Or one of the midwives was qualified to do it if I was lucky enough to See her on the ward she could do it. So I asked every person I came across if they were her.
Luckily I found her- she took DD away and snipped it while she was sleeping. She didn't even wake up.
I managed to BF her for 7 months.
I'm still cross about DD1. My dad is tongue tied. I've heard it's genetic.
WHY don't they check it at birth? It's not as if it takes lots of money & machines to test it?
My DC are now in their 20s. I managed to successfully feed my DS for five months so assumed feeding DD would be the same. Feeding her was incredibly painful and she seemed to feel just enough to stop feeling hungry without taking a full feed. Finally when she was three weeks old she made me bleed quite badly so I reluctantly gave up breastfeeding. I felt tremendously guilty but the relief was immense, she was happier, I was happier and no longer in pain so it was the best thing for both of us given that we had no help. Some years later on her first visit to the dentist he diagnosed tongue-tie and it all made sense. I think there should be tongue-tie check of every newborn.
The understanding of the effects of tongue tie in this country are woefully patchy. And don't get me started on the effect of upper lip tie. Even if you ask if your baby has tt you may well be given the wrong information. The midwife who cut his anterior tt said my ds did not have a posterior tie. He actually had a severe posterior tie.
I was told confidently by a GP that tt rarely affects breastfeeding. I just don't know why they say this, as it seems to have adversely affected breastfeeding for an awful lot of women and babies.