The kindest Cut? The Emotional Impact of the Tongue-Tie Maze
On one fairly routine day for a postnatal doula I found myself ringing the doorbell of a potential client. Her baby was 2 months old and she wanted some support with the baby while she rested. As I greeted her and cast my eyes around the house, I could see with a glance that all was not right.
Usually by 8 weeks in, mothers are getting into the swing of things, feeding is more or less established, baby’s sleep and waking patterns becoming slightly more predictable. Generally by now, they are waving goodbye to their postnatal doulas, not calling one in.
It only took me a moment to get an idea of what had been occurring here. One look at the baby and my heart sunk. There was the characteristic heart-shaped tongue. As I looked more closely I saw the flash of frenulum I have become so familiar with. It was attached right at the tip, tethering his tongue cruelly to the floor of his mouth.
As she gently touched the bottle teat to her son’s mouth, I watched as he drank greedily but in an uncoordinated fashion, milk dripping from the corners of his mouth. Diplomatically I asked how things were going and listened carefully as the whole, sorry story spilled out.
Many reading this will be all too familiar with her tale. After a worrying start with her newborn not latching, readmission to hospital for weight loss of over 10%, the introduction of formula top ups and finally a diagnosis of tongue-tie at 4 weeks by a Health Visitor at a breastfeeding drop-in, she was now waiting a month for an appointment to have the tie divided on the NHS. Of course, during that month her supply had dipped more and more, with formula becoming an increasingly large part of her son’s diet – until I rang her doorbell that day, a few days into exclusive formula feeding.
The largest part of a doula’s work is listening. We listen to the stories of mothers and fathers; the narratives of the birth, the emotions of new parenthood, the highs and the lows of life with a baby. But that day I realised I’d listened to one too many tongue tie stories. It was time to give all these women a voice. I came home and announced on facebook that I wanted stories from parents about their tongue-tied babies. Not even I could have predicted the pain and suffering that appeared in my inbox over the next few weeks.
Much has been written about ankyloglossia, commonly known as tongue-tie, in infants. The controversy surrounding this subject has been well documented and, despite NICE guidelines stating that the impact on breastfeeding warrants the tie being released, many health professionals remain ignorant of the obstacle that this small oral anomaly can present to successful breastfeeding.
A quick search of an online medical dictionary returns this simple definition.
tongue–tie Function: noun: a congenital defect characterized by limited mobility of the tongue due to shortness of its frenulum
Here’s how the National Institute for Clinical Excellence defines it:
‘Ankyloglossia, also known as tongue-tie, is a congenital anomaly characterised by an abnormally short lingual frenulum; the tip of the tongue cannot be protruded beyond the lower incisor teeth. It varies in degree, from a mild form in which the tongue is bound only by a thin mucous membrane to a severe form in which the tongue is completely fused to the floor of the mouth. Breastfeeding difficulties may arise as a result of the inability to suck effectively, causing sore nipples and poor infant weight gain.’
Why does this insignificant-looking frenulum cause all this debate? Generations ago it was a well-known routine procedure. These days, it seems, it’s very existence is often questioned. Certainly the medical literature seems to suggest that tongue-tie doesn’t affect breastfeeding.
Mervyn Griffiths, a pediatric surgeon who practices at Wessex Regional Center for Pediatric Surgery in Southhampton is a leading light in the field. Back in 2007, his prospective double-blind, randomized controlled trial seemed to prove both the critics and the textbooks wrong.
In the trial, two groups of babies were immediately returned to their mothers for breast-feeding, either after division of the tongue tie or without treatment. During interviews, 21 (78%) of 27 women whose infants received treatment said breast-feeding had improved compared with 14 (47%) of 30 mothers whose infants were not treated. The experiences of 3 women were excluded because of a loss of blinding. The results were statistically significant ( P < .03).
Follow-up surveys a day later found that 90% of mothers reported improved feeding, with 3.3% reporting a full resolution of problems. Repeat interviews after 3 months revealed that 90% of the mothers still experienced improved feeding compared with their pre-surgical experiences, but now 55% said that their breast-feeding problems were fully resolved.
Pretty impressive, eh? But it seems that many in the field are not singing from the same hymnsheet, despite NICE Guidance:
‘1.1 Current evidence suggests that there are no major safety concerns about division of ankyloglossia (tongue-tie) and limited evidence suggests that this procedure can improve breastfeeding. This evidence is adequate to support the use of the procedure provided that normal arrangements are in place for consent, audit and clinical governance.’
When asked for their stories, mothers bear out the research; tongue-tie is by no means a simple subject. The impact on breastfeeding can range from no impact at all to the complete cessation of breastfeeding. Add to that the fact that problems do not correlate in any neat fashion with the severity of the tongue-tie and it’s hardly surprising that many parents find it difficult to find anyone who can help them get to the bottom of their breastfeeding problems.
But all this jargon, all this abstract talking about frenulums, breastfeeding difficulties and ‘division’ hides the real stories from the trenches. And ‘trenches’ seems like an adequate image for it appears there’s a war going on; between the pro- and anti-snippers. Thing is, it’s the parents and babies who are all too frequently stuck in no-man’s land, caught in the crossfire.
The following stories are all from ordinary mothers from a variety of backgrounds, all of whom assumed they would be able to breastfeed. All have given permission for their words to be used, many with their own names attached. Many told me how passionately they feel that other mothers should not have to go through what they went through.
Here’s the first story I received when I put out a plea for stories through my online networks. A major theme here is how confused this mother felt and how she was blaming herself for the pain that feeding was causing her. It also throws up how a ‘lay’ supporter is often the sole source of emotional and informational support the mother receives. This lay supporter is an Association Of Breastfeeding Mothers Breastfeeding Counsellor. ABM is a charitable breastfeeding support organisation in the UK. Other Charitable breastfeeding organisations mentioned in this article are Breastfeeding Network, La Leche League and National Childbirth Trust.
“…My baby is 6 months old. I was told she had a tie very soon after birth as she didn’t want to feed, which was then checked by the ‘expert’ on the ward…who said no tie was present. After weeks of pain and strange clicking noises C came out and confirmed a tie. [She] got the baby café person out to confirm who said yes there was one but they may well not do anything about it and I would really have to fight my cause at the hospital but she would get us an appointment. The appointment happened – the consultant took one look said oh yes I can see a tie and snipped it.”
When I asked her how she had been feeling at the time, she said,
“Confused!!! …I thought I trusted the ‘expert’ as that’s how she was sold to me and I was rather knackered as I had a somewhat difficult birth. It wasn’t until Charlotte came round and showed me what she could see and put it in a way I could understand that I believed someone else. To be honest I thought it was me…. I didn’t know the clicking was a sign. Various midwives had watched me feed and not said anything and I had complained about pain but none of them mentioned it.
Once it was confirmed but I was told they may not do anything I felt rather deflated to be honest. I had gone from struggling to continue with feeding and thinking I was going to have to give it up and after my birth not going anywhere near even my worst case birth plan I really wanted to do this and it was the only thing I had left that I felt I had control of if that makes sense?
After they just snipped it there and then it was relief I guess. We went back to the car and I fed her and she latched on and the pain was gone and the clicking noise disappeared as she got the hang of it again.”
Here is a mother whose breastfeeding relationship was entirely broken by an undiagnosed tongue-tie. Despite support to fine tune her baby’s latch, her pain continued. In a culture plagued by the myth that ‘breastfeeding hurts’, it seems that no-one took her on-going agony as a sign of anything untoward. Her feelings of depression, impeded bonding with her baby and presumably the knock on effect on her partner and wider family show the wider implications of breastfeeding problems.
“My son was diagnosed with a tongue tie at 4 months old. From the word go breastfeeding him had been agonisingly painful throughout every single feed and my nipples were in shreds from the first day. We had been seen by three midwives, our regular health visitor, and an NCT breastfeeding counsellor, none of whom had spotted the tie (in fact I don’t think anyone had looked in his mouth). In hindsight it was blatantly obvious – the classic heart shaped tongue which he never lifted – but as a first time mum I naively thought that was how a newborn baby’s tongue looked. He also used to fall asleep and slip off the breast, he would fight and fight when I attempted to latch him on, it was really really difficult.
Unfortunately by the time the tongue tie was spotted we were already well down the road of mixed feeding. From the second week I had begun to express milk and was mostly bottle feeding him this and formula, with some breastfeeding when I could stand it. Ironically breastfeeding was becoming easier by the four month mark but of course my milk supply was shot to pieces as I had so little useful support. We gave up breastfeeding shortly afterwards when he went on nursing strike during a cold.
The emotional impact of this was huge. Finding out there was a tongue tie was at once a relief and also a huge frustration. I was told, however, that the policy in the area was not to snip tongue ties so I wonder if it would have been even worse had I known. More important, I would say, was the emotional impact of finding breastfeeding so painful and yet having everyone insist that they could see nothing wrong. I felt so guilty for being unable to do what nature intended, I would be in tears whenever my son wanted feeding because I dreaded it so much and I am sure I developed postnatal depression as a result (having being diagnosed with this after my daughter’s birth I recognised the feelings from before). It most definitely affected my ability to bond with my son in the early months, which is something I bitterly regret to this day.”
This story thankfully has a happy ending, showing that a helpful companion can make all the difference. Doulas are lay companions, or ‘peer’ supporters, not lactation specialists (although many are also breastfeeding counsellors) so it is not within their boundaries to diagnose anything or advise any particular course of action. This doula provided emotional, practical and informational support.
“When my little girl was born she couldn’t feed and all of the doctors and midwives put it down to her being sleepy from labour.
The problem first seemed to arise from my midwife writing in my notes ‘baby fed at birth’, which she didn’t. We had a doula with us who spotted that Mia had a small tongue tie straight away and said that it could be a reason for Mia being unable to feed. The next day we had our follow up and mentioned the tongue tie to the doctor, who said it was so small it shouldn’t cause a problem. Mia continued to try and fail to feed, she just couldn’t quite seem to open her mouth properly, and only had one ‘successful’ feed where a midwife forced her on, she fed a little and then my nipples bled straight away.
The hospital were going to send me home, but I asked to stay another night because she hadn’t really fed. The next afternoon after seeing no improvement, and no one seemed able to help, we checked out, and went home.
[After] another night of Mia not feeding, and more doctors saying the tongue tie was insignificant, our doula gave us the number of a private tongue tie consultant who we saw the next day. He snipped the tongue tie, we took Mia into the next room and she fed straight away! Unbelievable.
She lost [a significant amount] of her birth weight in those first two days. I breastfed for a year after that, but would not have been able to breastfeed for a day if we’d listened to the doctors…
It was really confusing having the two different opinions, because with the doctors being medically trained you’d hope you could have more confidence in what they were saying…On the second night we had to take Mia to A&E because she looked like she was really starting to suffer…the doctors gave her a bottle of formula and said because she had fed from that the tongue tie wasn’t problem. I think it was not being able to find one single doctor or midwife out of so many hat would listen to us that really made us feel so frustrated and angry, and to be treated like we had no idea what we were talking about.
My husband just felt the same, frustrated and angry because it seemed they were wrong and just not paying attention to what we were saying. After telling one doctor in A&E about the tongue tie, he told us of course it wouldn’t make a difference, and then he came back an hour later with information printed off the internet which discussed how tongue ties did in fact make a difference, but then still did nothing!”
Here is an assertive mother who experienced what many believe should be routine – the tongue-tie spotted at birth, information provided on the possible implications and options for treatment or ‘watch and wait’ and counselling though the informed decision-making process.
“My son’s tongue tie was picked up the day he was born by a midwife on the high dependency unit…but then I had conflicting information from several other midwives and doctors…I knew it needed to be cut, he couldn’t protrude his tongue at all and within a day my nipples were sore. As a second time breastfeeder and being of a medical nature (I’m a vet) I was confident enough to push and push for it to be snipped and got an appointment with the only person in the hospital qualified to snip it (!) on day 3. I chatted to another mum in hospital…who had been told her baby needed an “operation” to correct his tongue-tie and was terrified, she was already at the point of giving up breastfeeding because she was sore and was not prepared to put her baby through an operation in order to rectify the situation.
It can be so simply sorted, it should be something that is checked for in the new baby checks and sorted immediately.”
This next comment is from a client of mine – I am a birth and postnatal doula as well as a breastfeeding counsellor. This mother is a medical doctor, so did her research when I suggested that it might be useful to have her daughter’s tongue evaluated by an expert. She decided to call the IBCLC (International Board Certified Lactation Consultant) I recommended and the tie was divided privately soon after she came home from hospital.
“What I would like to know, however, is why checking for tongue-tie isn’t part of the baby check. I’m still baffled why Martha’s hearing had to be tested before she left hospital, but nobody wants to check if there might be a potential feeding problem, it is so much more urgent. If a tongue-tie is identified, extra attention is clearly required!”
Perhaps Vicky has identified a vital point here. Maybe it’s not breastfeeding that is seen as crucial by some working in the health service, but any feeding? Is the widely accepted belief that ‘if the baby can’t breastfeed, formula will do no harm’ informing practice?
Here is a story of such trauma and suffering that she must be one in a million to have carried on feeding through so many bouts of mastitis. Why do women put themselves through such suffering? I sincerely believe it is because women are ‘driven’ to breastfeed. It is a biological imperitive; an activity that goes to the heart of how we define ourselves as mothers. For many, failure is just not an option.
“Daughter born in November 2009, was aware immediately of feeding difficulty (I fed my older two children so I knew that it felt all wrong). Wasn’t believed, told it was just positioning and attachment blah blah.
By 3 weeks I had suffered all the usual trauma – cracked, bleeding nipples, mastitis and my daughter had disgusting, smelly, frothy green nappies. I can’t quite remember the timeline now but the ‘short’ version is:
Asked midwives – told latch looked fine, no problem. Asked health visitors – told no problem. Asked GP – told no problem (had phoned a LLL counsellor and described everything who agreed with me it sounded like tongue tie). Got referral to paed – eventually appt came through – yes there was a tie but it was ‘small’ and likely to not need anything done. (Daughter was thriving but I was on my second or third bout of mastitis by that point and in a LOT of pain with feeding).
Referral to Infant Feeding Advisor specialising in tongue tie – told no tie. Was attending breastfeeding groups left right and centre, one was attended by a HV who used to be a MW. She agreed – posterior tongue tie. Another referral to another infant feeding advisor, YES – there was a tie but ‘small’ etc etc. Old news by now. Fourth or more bout of mastitis. Told I might as well give up breastfeeding. (Definitely did not want to give up although was really really upset by now). Another referral to paed ENT consultant – yes tongue tie but now she’s 6 months old, might as well not operate. I nearly cried. He asked how much longer I was intending to breast-feed. When I said indefinately, he changed his mind and said the op was worth it if I was carrying on but not if I was going to switch in the next few weeks.
Op was booked, daughter was ill so I cancelled it. Secretary called back a couple of weeks later with another date (daughter 7 months old by now) which I declined thinking – well we’ve managed this far on our own, I might as well just carry on now. Promptly got another bout of mastitis, regretted cancelling the operation but left it anyway. Daughter is now 17 months and has just finished feeding from me.
It was a huge trauma to me and if I hadn’t been so bloody-minded and had such faith in breast-milk and such strong feelings against formula (despite my older 2 both receiving formula milk after a certain point), I would have caved under it all…
My husband was very supportive (he has learned over the years!). But – he thought it was an awful lot of hassle and doesn’t really FEEL how I feel about breast-feeding. My older kids were probably reeling anyway from the addition of the baby but it made things difficult having to find a way to get appointments while dragging them around with me. Especially when I was getting nowhere fast. Quite a few appointments left me in tears. I cried a lot.”
Here is another example of multiple care-givers missing the tie.
“My son is now 11m. He was born at 37+8 by elective caesarian section. He was readmitted to hospital twice after discharge – on day 5 and day 21 due to prolonged jaundice and poor weight gain. I had breastfed two babies previously so wasn’t really worried about the whole feeding cycle. From the beginning the community midwife team were pretty much on my back about the… problems, though I wasn’t worried. Both times on readmission to the children’s ward, we were observed and told that we were feeding correctly. At some point between the 2 readmissions, baby and I developed thrush. Obviously this did not help, and in time we were directed to a breast feeding support midwife…When baby was 7 weeks old we attended her drop in clinic. Within 30 seconds of seeing the baby she diagnosed tongue tie. We returned the following week to have the tie snipped. I noticed improvements to feeding almost immediately, though the thrush did take a while longer to clear up.
I had seen various midwives, the health visitor, the clinical director of paediatrics and other staff on the children’s ward, none of whom had noticed the tongue tie. The breatfeeding midwife was excellent throughout. She did say that some paediatricians don’t recognise the link between poor feeding/weight gain and tongue tie. 11 months later, I still feel sad and angry that this was missed, and as the rough start we had.
Here is a story that shows that tongue-tie doesn’t always obstruct successful breastfeeding. This experienced mother and her baby worked together to find what worked for them.
“Ben was born…in a water pool in our back room…
I knew breastfeeding would be a journey again although I had the experience of feeding the others long term…
It was [our midwife] who when looking over Ben noticed his tongue. It is attached right to the end so he can’t stick it out very far and his tongue makes a heart shape where his frenulum pulls on it.
I knew from past experience that because of a partially inverted nipple it was easier to breastfeed on the right hand side but it was possible on the left so we gave it a try.
As with anything new it took some time to dance to the same tune. [Our midwife] helped a little with positioning Ben and gently we began our new dance.
At that point in my life I had not heard much about La Leche League so I didn’t have much support at all but didn’t need it too much either.
It was really a journey of trial and error…
Ben found the right hand breast more satisfying to feed from and so although in the beginning we fed from both sides as time went on he fed less from the more difficult side so I ended up feeding only from the better side for a long time until he was over two and ready to move on to different things.
I think I would have used information to support me like the LLL info on breastfeeding with a
tongue tie…Had it been our first child I think I would have needed much more support and encouragement.”
Conversely, this experience exemplifies the many problems that tongue tie can cause – not only with breastfeeding.
“My second son, Jacob, was born with a tongue-tie. At birth he was very sleepy and did not wake in order to initiate breastfeeding, despite skin to skin. He was born at home so the midwives returned early the next morning. He had fed in the night but I knew his attachement was poor as the feeds were already hurting. When the midwife did the newborn check I said he was tongue-tied – my nephew was tongue tied and I knew Jacob’s tongue looked strange so I googled it. It was such an obvious tie. Unfortunately because it was the school holidays the breastfeeding clinic that refers to the surgeon for frenulotomy was not on that week. Despite asking midwives for help it was not long before I was dreading every feed, not wanting to hold my new son as I just associated him with pain. I already had the beginnings of post natal depression and dreading every single breastfeed, which were approximately every hour (sometimes just constant feeding!) I did not bond with my baby.
When I was able to get to the breastfeeding clinic the lactation consultant…was fantastic in helping me with my positioning. Feeds were still unbearably painful but at least they were not lasting for an hour at a time. By day nine I had developed mastitis…I contacted the midwives and she suggested antibiotics…
On the Tuesday we got a call to say Jacob’s tie could be cut the next day. I knew the procedure was supposed to be quick and relatively painless but I still worried about my poor baby. I remember sitting in the waiting room, thinking I would feed him after it was cut. He was desperately hungry but I did not want to feed him in the waiting room as there was no way I could do so discreetly…
The surgeon explained the procedure fully, I consented and left the room whilst my husband held our 12 day old baby. In seconds they were out the room, leading me to think it hadn’t been done. The cry did not change from a hungry to a pained cry. I took Jacob into a little room, removed the swab that had a smear of blood on it and fed. I was expecting an immediate change to his feeding, but after two weeks of poor attachment it took a further four weeks for us to learn to breastfeed effectively and for my nipples to fully heal.”
I have often heard that the breastfeeding problems that many mothers put down to tongue-tie are merely ignorance of how to latch a baby on. A story of twins exemplifies how a mother can feed one baby perfectly and have trouble with the other.
“I had twins by planned section at 38 weeks. Both were good sizes…I planned to breast feed them as I had fed my daughter. In recovery, I fed Max who latched straight away, he was a natural. Tom though was a different story, he kept falling off my breast and they put it down to him being 38 weeks and a bit sleepy. For the next 3 days this happened again and again, I managed to feed him once for 20 minutes at which point I was allowed to go home…
When I got home, I spent the next 24 hours feeding or trying to feed constantly. By this point my nipples were cut to shreds and I was bleeding from Tom’s attempts to feed. I couldn’t physically latch either boy any more without being in howling pain and distraught. Exhausted at 11pm, I got out my breast pump and bottles and started expressing. The midwife that visited me at home just smiled and put my abandonment of breast feeding down to having twins.
Two weeks later, the health visitor came to see me, she spotted Tom’s tongue tie and offered to relatch both of the boys onto me. By then I had an expressing routine that was working so I declined. She did tell me that the tie could be cut but only if I went back to breast feeding. Emotionally I was a wreck and felt that it was one too many things for me to take on board. That said, I felt I had failed…”
The follow story is a reminder of how undermining and hurtful comments from well-meaning helpers and care-givers can be. This mother remembers these comments still, even months later. I met this mother in person at a mother and baby group and I was truely moved by her story – and in awe of her expressing milk in such quantities for such a long time.
“My baby Harry was born in October 2010 and I was desperate to breast feed him. I had been along to an NCT breastfeeding evening a couple of weeks previously where breast feeding had been presented as natural and easy so I was also excited about the prospect of feeding my new baby. To my dismay the reality of breastfeeding was not an exciting or bonding experience for me and my baby. I found that I was not able to satisfy Harry’s hunger at all despite my best efforts…I was feeding for 7-8 hours- till at least 4am until both baby and I fell asleep exhausted. I would then start feeding again shortly after for a similar amount of time. I couldn’t go out because once he started to feed I knew we would be there for many hours to come. Harry was never full. He screamed constantly. I was exhausted, drained, confused and emotional. I called out a few midwives to my home and was told I had a lazy baby or just a hungry baby. One midwife even joked that I had a bad one and should send him back! I was advised to ‘top him up’ with formula but I found that as the weeks continued I was having to give him more and more formula when I really wanted to feed him myself. Finally I went along to the Breastfeeding drop-in where Harry was immediately diagnosed with tongue-tie by a lovely and supportive lady. I had the tongue tie cut almost immediately.
Unfortunately at this stage Harry was 3 months old. Once his tongue-tie was cut I was eager to continue breast feeding however my milk was in short supply since Harry had not been able to suck effectively and keep up the demand for milk. I hired an electric [pump] to try to boost my milk supply and only had 10ml when I first expressed. I had to continue to give him formula to feed him. Emotionally and practically I couldn’t go back to feeding him for hours without a break and I didn’t think it was fair on him who, at 3 months old, was starting to be more aware of the world and wanting to exlplore. Sadly, by the time I had increased my milk to a stage where Harry could gain some satisfaction he had lost his latch and wouldn’t accept the breast. This caused much upset.
Harry is now 7 months old. I am still expressing milk 5-6 times a day and then feeding him through a bottle. It is frustrating but I am determined to give him all the breast milk I can. The struggle to feed my baby affected my initial relationship…and has left me feeling guily and inadequate as a mother…Tongue-tie is something that is so simple to treat and I hope and pray that no other mothers have to go through what I have been through.”
This mother is a Breastfeeding Network Helper and feels perhaps she had less support from staff because of her ‘qualification’.
“Because I have breastfed before, the midwives didn’t stay to check that Tansy was latching on. Having spoken to other mums about this I don’t think they realise sometimes that every baby is different and it’s not just a first time mum that may need assistance!
So, the girl wouldn’t latch on. I managed to get her to comfort suck one night (day 4), but only when she was really sleepy. The rest of the time I could only get her to latch on if I jiggled her constantly… It was as if whenever she got close to my nipples she was screaming ‘no! not those!’
…I was lucky enough to see my BfN supervisor on day 3…Come day 5 and I was wishing that I’d asked the midwives to come back before, as I was convinced that she had lost too much weight but had no way of knowing. And everyone I spoke to about it told me not to worry, that she was doing just fine. But I didn’t think she was – she was alert when those reassuring me saw her, but sleeping so much more than I expected, not very with it most of the time that she was awake. I just felt that things weren’t right.
Thankfully the midwife that came to get her weighed had worked in SCBU so was used to seeing very poorly babies, and she could see that we had realised what was going on and had begun addressing the problem – I had started hand expressing a larger amount and cup feeding the previous day. So she wasn’t too concerned about the 14% weight drop, and felt it wasn’t necessary to take her in to hospital to get her checked out. But then she was overruled by the hospital. She reassured us that we didn’t *have* to go in, but the doctors would like it if we did, and that it would only take an hour or so.
Then when we got in they took forever to get round to getting the test done and off to be processed – I felt like screaming at them when they said the tests were going to the lab…They wanted to see her drink 2oz before they’d let her go, and I had to point blank refuse a bottle…before they gave me a feeding cup. They wanted me to give her formula, until I expressed 4oz and then they backed down. I’d just managed to get her to have 2oz before we left to take her into hospital, so there was no way she’d be doing that again any time soon. They demanded that I wake her up, not hanging round long enough to realise that it wasn’t working, and it felt like they were accusing me of being too soft, not doing it right, that sort of thing. The registrar on duty was Indian, and his use of the English language, while perfectly fluent, was very much ‘you must’ and ‘you will’. He insisted that we admit her overnight and I point blank refused. I think it was only because I knew he was going off in a couple of hours and someone else was taking over that I was coping with the idea of hanging around and getting another opinion.
My husband was being supportive to a certain extent, but even he wasn’t letting me trust my own instincts fully.
Anyway, we saw a consultant when the shift change happened…we were able to talk to him…which was good. But after he’d gone he realised that he wanted to check whether she had a cleft palate, and my baby blues was getting the better of me big time, we’d been there 5 hours by this point. So I went home and left hubbie with the girl to get the oral stuff checked out. So I wasn’t there when it happened, but I somehow presumed that because he’d given the all clear on the cleft palate then he’d also checked for tongue tie, and that stuck with me.
Checking my forum writings at the time, on day 8 I have written ‘Oh, and tongue tie has been checked by several different people, it’s not that.’ Also I note that I talked about getting an SNS feeder at this point too, and by day 13 I have suspected a high palate.
…Tansy begins to feed properly. And then we have painful latch issues beginning to emerge. Creases on nipples and blisters. Taking forever to feed. Considering nipple shields but when I finally give in then I find she’s worse. I go back to using SNS, but this time as a finger feeder.
Day 19, I write that the GP says she doesn’t have a high palate.
I write ‘ The problem I seem to be having now is that I am struggling to find a balance between everything that is being expected of me…What I’m doing right now is expressing everything, and using the SNS as a finger feeder, to give my nipples a break. I’ve been expressing while I’ve been finger feeding…realistically I need to face the thought that I might not be able to feed her myself. It may be that she and I will never learn to nurse together. I think that is what is worrying me most. If she continues to not be able to self regulate then she may always need to be ‘told what to eat’. I figure that the more relaxed I am the easier my milk will come, and there’s def something blocking it atm…
Day 22 I have someone tell me that it all points towards tongue tie, and that I should get a further opinion, and to google posterior tt, if there’s nothing obvious. She is LLL [La Leche League] and training to be a Lactation Consultant, I later find out.
HV (not my normal one ) admitted that she wouldn’t have the knowledge to know whether it was posterior tongue-tie, so didn’t even bother looking, but instead recommended I make an appt with my GP. Huge frustrations then when I speak to GP – she says that she has less experience than HVs in this area, and made me an appt with a senior female GP who she thinks is more likely to know. But she doesn’t know who to refer to if that is the conclusion that is arrived at. Hubbie looks into it online and reports that if there are no issues with weight gain then they are unlikely to do anything – I translate this as meaning they won’t do anything for us and start to feel angry and frustrated.
Now that tongue-tie is mentioned on the forum, I get reassuring stories from other people too, about getting second opinions and it gives me hope.
Day 26 – I finally manage to take and put some photos up for the LLL lady to see…I don’t know if I’ve managed to capture anything useful, but she detects a tight frenulum…so this gives me more hope that this is indeed a problem that can be fixed. And then that night I completely lose the plot. I can’t face the thought of the GP appt in a few days time, her telling me that there isn’t a problem. What do I do if that’s the case? I am exhausted and my pump starts to play up, my hubbie is out drinking with some friends and I have to go pick up him up coz I feel like I can’t cope, just being in the house alone with Tansy and my emotions. Somehow it felt better having him there, snoring his drunken head off next to me! I calm down but in the morning we talk…
In amongst all of this I have had some wonderful support from someone who had very similar experiences – she suggested it might be tongue-tie early on but I said no to her as well, as I had had several Health Professionals tell me otherwise. Went I finally concede that it might be tongue-tie she tells me her story and points me in the direction of the LCGB site; she couldn’t wait 3 weeks for a referral and went private, and suggests that I might find someone local to me that might be able to help.
So, day 27, hubbie convinces me to contact local tongue-tie divider and the Cambridge lady replies saying she’s in australia right now, but refers me to [an LC] in London. I emailed…and next thing I know, she is visiting someone in Cambridge the following day and can come see us too.
Day 28 and she arrives. Here’s what I put on the forum about her visit:
‘So she arrived on Sunday morning, asked lots of questions, and did lots of assessing of different reasons why T might be having problems. She gave me a long list of symptoms to check against what I was experiencing, and I think I ticked about 80% of them, including several symptoms I hadn’t really been aware of (or wasn’t aware they were feeding issue symptoms) before thinking about them then! So, additional symptoms that I can remember were – nipple goes white and cold after a feed, bruises on the areola, small mouth gape. She also advised that T’s lopsided yawn is an indication of why she feeds better on one side than the other (and recommended an osteopath to resolve), and confirmed my suspicions of a high palate (even though gp said was normal). The kind of tongue tie that she has is submucosal, which I have since googled and found that the common name for this kind is ‘hidden tt’, and it’s the most likely to grow back.
The procedure itself was very quick and simple, and she instantly latched on afterwards with a much improved gape, and it felt so much better. The LC lady showed me how to get more breast into the mouth…She was more like ‘okay you don’t have a perfect baby here, so you’re going to have to make these adjustments to help out’ kind of an attitude. Very refreshing. She fully appreciated that the ‘nose to nipple’ thing just wasn’t working for us, as T wasn’t trying very hard to latch on, so talked more about how to get that position after managing to get her settled on the breast, instead.
So… feelings at this point? Feeling very let down by the NHS system – and just because I’m not completely falling apart when they see me doesn’t mean that I’m not in need of more help from HVs who just keep telling me that I’m doing really well. If I didn’t have my huge network of support online and through texts from BfN colleagues then I don’t think I could have gotten this far. I can really see how some women don’t. When I see my HV the next week and she rather flippantly says ‘oh yes we refer people to the norfolk and norwich all of the time’ I feel angry that she had this information but her colleague didn’t, the GP didn’t, etc.
At our 6 week checkup we spend a lot of time talking about the tt – she admits that they are taught tt doesn’t cause a problem for bf, and is really keen to hear what I have to say about it. Which is nice…
[Tansy’s submucosal tie needed re-snipping a month later] Since then her weight chart says it all – a noticeable leap not just back to where she was (just under 50th line) but slightly over (between 50th and 75th)…”
Here is another story of a doula providing the gift of signposting to an expert.
“Day 1: Our doula, S, put Sasha on the breast immediately after being born and she was feeding well. She also made sure that she got a good few feeds after the birth and before we all went to sleep. The hospital midwife checked breastfeeding before we left the hospital…
Day 2: On going home things seemed to be OK and having S around helped give confidence that things were fine.
Day 3: I realised that something wasn’t right as I was having problems latching Sasha on and my nipples were getting very sore. S came around and we tried different positions. She suggested that Sasha might have a posterior/sub-mucosal Tongue tie and suggested we have a lactation consultant look at Sasha.
Day 4: An NHS breasfeeding [support worker]…came out and said that Sasha didn’t have a tongue-tie and was feeding fine. We tried some other positions but nothing improved. S kept in touch and since things weren’t improving [we] contacted the lactation consultant.
Day 5: [The Lactation Consultant] came out, diagnosed aposterior/sub-mucosal tongue tie and carried out the procedure. After feeding Sasha after the tongue-tie my nipples were so sore that I had to give them a rest so started expressing around the clock until they healed before trying again. I couldn’t face breastfeeding with the pain but didn’t want to go on to formula so kept up with the expressing every 3 hours – a 24 hour dairy operation for about a week…..all this while boobs were out and smothered with lanolin to heal.
After about a week, started breastfeeding again. It wasn’t easy but it did improve. I waited until I had a post-natal doula, K, come and help me. For the first week things seemed to be going OK and by the end of that week I thought that we had a turned a corner.
The following week however, Sasha started bobbing on and off the breast alot and I was struggling and in pain again. K noticed a change from the feeding she saw during the first week and recommended I go to a breastfeeding support group in Queens Park…We tried all sorts of different positions and by the end of the session [it was] thought that Sasha’s tongue tie had come back. I was so upset I burst into tears. Hormonal and sleep deprived aside, the thought that Sasha would have to be snipped again, and the whole episode of expressing and nipple trauma would be repeated again was just too much.
I called [the Lactation Consultant] immediately and she came out the next morning and snipped Sasha a bit deeper. She spent some time with positioning during feeding and told me to go out that day and breastfeed Sasha somewhere in public. Between the tears, I laughed as this was something i had never even contemplated before as I was not confident and needed so many pillows that it would be embarrassing. My mother-in-law was around that day so we went together…I did it which made me feel so positive!
I have to say that as determined as I was to breastfeed, without the support of privately paid helpers, I don’t think I would have been able to persist with breastfeeding…The NHS talks about supporting mothers to breastfeed but they don’t seem to have the expertise and/or resources to do this…
Sasha was breastfed exclusively until she was about 8/9 months old. She is now almost 1 and getting better with solids. I have dropped the night feed as she started sleeping through the night at about 10/11 months and am still breastfeeding her now….once again thank [you] S, K and all the others I have mentioned above for their help support during that difficult time.
It seems that parents are attempting to negotiate the maze of tongue-tie advice and treatment (or lack of it) on a regular basis. The twists and turns, dead ends and set backs that beset many of them can cause great emotional suffering, made worse by wondering why on earth they are being told such different things by different people.
It seems that parents and breastfeeding supporters may need to understand where a great many health professionals stand on the subject of tongue-tie. Here’s what one doctor has to say on the subject:
“[I have] no idea what med students are taught now about tongue-tie but present received wisdom is that it doesn’t exist.
I have to say I was of that opinion until I saw a mum…who had had a previous babe who breastfed well and the next didn’t and had tongue tie. I think mum also had v sore nipples. I discussed her with T. L a paed surgeon…who was of the same sceptical outlook as me but was persuaded to snip the frenulum. This transformed the babe who suckled well. Mum no longer had sore nipples and both he and I are now converts, but I think we are in the minority.”
Dr Steve Rose (Peadiatrician)
So why this “sceptical outlook”? Quite an extensive online search of medics and student medic forums yielded me no evidence of any discussion of the topic at all. I found just one study quoted on a website for doctors:
‘a review has been undertaken to review the presenting features of tongue-tie in childhood and indications for frenulotomy, drawing conclusions from a retrospective study of patients encountered in paediatric surgical practice and from the literature
the review concluded that there is no place for division of tongue-tie without anaesthesia in the newborn. Speech difficulties related to tongue-tie are over-rated and mechanical problems are underestimated
the indications for frenulotomy include articulation difficulties confirmed by a speech pathologist, mechanical limitations such as inability to lick the lips, to perform internal oral toilet or play a wind instrument
there may be rare instances in infancy where problems with feeding and suction can be helped by frenulotomy but evidence for this is anecdotal
operation requires general anaesthesia except in older, co-operative teenagers in whom local anaesthetic is appropriate
1. J Paediatr Child Health. 1995 Aug;31(4):276-8
However, the message parents get from other NHS sources is quite different:
Some babies are born with a tight piece of skin between the underside of their tongue and the floor of their mouth. This is known as tongue-tie and it can affect feeding by making it hard for your baby to attach effectively at your breast.
Tongue-tie is easily treated. If you have any concerns, talk to your midwife, health visitor or GP. ”
A quick search of www.evidence.nhs.uk reveals many studies, including the Randomised Controlled Trail by Mervyn Griffiths mentioned earlier in this article and the NICE guidelines quoted above.
So what effect can this conflicting advice have on parents ? I asked a clincal psycologist:
“When faced with conflicting messages, parents can often find themselves paralysed by indecision. It is easy to become overwhelmed by all the different advice, which can confuse a parent and cause them to stop trusting their own instincts. When confronted with differing advice, and particularily when this advice is contrary to the path the parents instinctively feel is right, this can lead to “cognitive dissonance” which causes emotional confusion and great distress (note cognitive dissonance – first named and described by Leon Festinger . Tavris and Aronson (2007) defined it as: Cognitive dissonance is a state of tension that occurs whenever a person holds two cognitions (ideas, attitudes, beliefs, opinions) that are psychologically inconsistent, such as “Smoking is a dumb thing to do because it could kill me” and “I smoke two packs a day.” Dissonance produces mental discomfort, ranging from minor pangs to deep anguish; people don’t rest easy until they find a way to reduce it (p. 13).) Not knowing which way to turn, parents may stop completely, their external inaction reflecting their internal conflict.”
Dr Kathryn Newns, Registered Clinical Psychologist. BA, DClinPsy.
My latest story is from a mother who has suffered from mastitis almost constantly for the 12 weeks of her child’s life. She certainly seems to be suffering from the ‘cognitive dissonance’ defined above since the peadiatric surgeon refused to divide her child’s submucosal tongue tie, saying there was ‘nothing there to snip’. She is feeling the angish of not knowing which way to turn and who to trust. Meanwhile, her breasts plague her.
This article is not designed to persuade health professionals to divide tongue ties, or even to persude care givers to learn more about the subject but to call for a better understanding of the emotional impact of breastfeeding problems on parents, their families and the wider community.
The stories here, in their unedited entirety will form the basis for a place online where parents can share their stories. I hope by giving them a voice I can promote empathy and greater understanding on all sides. So if you have a tongue-tie story you would like to share, please feel free to contact me.
I give the last word to Alison Blenkinsop, breastfeeding expert extraordinaire, hitherto International Board Certified Lactation Consultant and famous writer of breastfeeding songs! This song can be found in her book ‘Fit to Bust’ which is sold in support of Baby Milk Action. More information about Alison and her wonderful book can be found here.
It’s a snip! (Tune: How do you solve a problem like Maria from The sound of music)
How do you solve a problem like a tongue-tie
when it prevents a babe from feeding well?
Many’s the time I’ve seen a nursing mum cry;
the latch is poor, her nipples are sore, it’s hell!
How can the baby get a proper mouthful
if the wee tongue is tethered at the tip?
We need to ask the paed
to watch the baby feed,
the hedge of ignorance we have to clip;
so how do you solve a problem like a tongue-tie?
It’s very safe and easy, just a snip!
©Alison Blenkinsop 2004
Please feel free to leave your story below. If you provide a service for tongue tied families, please leave your details over on the Resources page