I have recently moved the majority of the Tongue tie information and stories to my other site, www.thebirthhub.co.uk If you are looking for stories or tips on finding expert diagnosis or treatment of tongue tie, please go there to see if you can find the information you’re looking for. If ot, please feel free to send me an email You can also join our support group on facebook if you wish: https://www.facebook.com/groups/tonguetie/
This page is for stories from parents, breastfeeding counsellors, lactation consultants, midwives, health visitors and anyone else involved in the care of mothers and babies who has a tongue-tie story to share. Please see my post in my blog on this website foran explanation of my interest in this subject.
If you have a story, comments or resources of interest you would like included here in order to provide support and information to parents, please feel free to contact me.
You can read more about tongue-tie on my wonderful colleague’s site: http://www.analyticalarmadillo.co.uk/
and here: http://www.brianpalmerdds.com/
kellymom page on tongue tie: http://www.kellymom.com/babyconcerns/bfhelp-tonguetie.html – includes lots of links to other info
Breastfeeding and frenulums (Dr Brian Palmer) http://www.brianpalmerdds.com/bfeed_frenulums.htm. Brian was a US dentist. Warning: some unsettling photos.
“Tongue Tie and Breastfeeding” http://www.llli.org/llleaderweb/lv/lvaprmay02p27.html by Catherine Watson Genna, IBCLC
Catherine Watson Genna’s guide to spotting tongue tie http://cwgenna.com/quickhelp.html
List of TT symptoms: http://www.ann-dobson.co.uk/tongue-tie_symptoms.html
Video of swallow study on baby with posterior tongue tie: http://www.youtube.com/watch?v=lrD9cemJNyw
Support group on facebook https://www.facebook.com/groups/tonguetie
If you divide tongue-tie, please feel free to leave your details below.
Here is a story from Callie
Molly arrived early. After an admittedly fabulous birth, nothing had prepared me for the shock of having that birth nearly a month before I expected it. The labour progressed quickly and I was only aware of being in labour for the last two and a half hours: when they plopped my daughter on my chest, I was about 70% sure I’d dreamt the whole thing.
On admission to the ward, she had her blood sugar tested so many times that her feet resembled pin-cushions. She screamed (or tried to scream – from her immature lungs it sounded pitiful) every time, reaching out, I’m sure, for me. The midwives gave her two hours for her blood sugar to improve during which time she had numerous blood tests, but despite their hopes the levels fell
steadily and Molly became more and more listless. I was presented with the choice of giving her formula to increase her levels or to leave them to their own devices on the understanding that if they continued to drop, she’d probably go into a coma, be admitted to SCBU and put on a drip. It wasn’t a hard decision. I didn’t want to give her formula but the coma/SCBU option was not one I wanted to take. With her blood sugars at such a low level I agreed to the formula.
Minutes later the feed had come back up. Repeated tries resulted in the same and a further test revealed even lower blood sugar levels.
“You’re going to hate me for this” said the midwife, “but I’m going to say the best thing to do is to suction her out, get a tube down her, and put her on Nutriprem”. For Molly, it was the ultimate ready-meal; no need to even suck. At the same time, a hospital breastpump was wheeled in for me to extract my colostrum and encourage my milk to come in.
Our first week in hospital was fraught with visitors, an intense lack of privacy and a severe lack of support. I was terrified of handling my baby in case I inadvertently pulled on her tube and hurt her, but when I had the privacy to do so I tried to feed her myself. She would attempt to latch on but lose interest quickly and would never suck. A quick examination revealed no tongue-tie, so on the second day I was told she had no suck-reflex, and was given a nipple shield to help stimulate her. The shields worked, and eventually she started to suck. She suckled from me three times that day and I thought I was on the way to cracking it. It wasn’t perfect, but we were making small progress.
On the third day my milk came in and I was able to start storing feeds in the fridge so that the majority of her feed would be breastmilk. They refused to remove the tube or stop mix-feeding her until breastfeeding had become established, so the fight was on.
From the first afternoon of her life she was on a gut-full of Nutriprem every three hours. Even if her suck reflex HAD developed, I doubt she’d have been interested in working to get the milk from me. She wasn’t even used to having to get it from a bottle. After the success of the second day I started trying to BF using the shields before the “official” feeds but she just got angry and
frustrated. On that occasion (I think this was day three) the midwife helping us noted that while I had huge, flat-nipples, Molly had a tiny, premature jaw. This meant that Molly “couldn’t physically feed naturally anyway”, and she advised me to keep using the shields (another quick check confirmed there was no tongue-tie). However she advised against using the only comfortable,
successful position I’d found – the football hold – and after I took her advice it all went to pot again.
That day saw me in tears while another midwife agonisingly manhandled my boobs to try to hand-express a drop of milk to entice her into sucking, told me off firstly for flinching and secondly for using the shields I’d earlier been told I couldn’t physically feed her without. I have always had a bit of a problem with people touching my nipples, so this was all significantly difficult for me.
Denied the two things that had so far helped me – the shields and the football hold – everything stopped working.
After a tearful encounter with the midwife, it was generally agreed that I couldn’t physically breastfeed and the decision was made to mix feed until my milk ran out. Having accepted that I’d never be able to breastfeed, her next feed was given using a bottle. Initially I was happy and relieved but afterwards I became upset. I felt cheated. I felt I’d never properly tried and I couldn’t
believe my inability could be discovered and accepted so quickly. However the midwives were saying we wouldn’t be allowed home until we’d established a feeding routine and I was exhausted with the lack of sleep on the ward, so I didn’t feel I could ask to continue trying to BF. I told them I intended to bottlefeed.
On the fourth day Molly pulled her own tube out, putting an end to her tube-feeding. She was fully on mixed bottles that day, and having demonstrated that I could use my own breastpump on day five we were allowed home.
On the sixth day I called a BFC. She said it would be very strange to have borne a baby who physically couldn’t feed from me. She told me to put her straight back onto the cup and continue trying to feed – that in time her jaw would become bigger and she’d be able to suckle, probablyby her due date at least. We began the messy, hospital-banned process of cup-feeding at home
while I continued to express day and night. Every drop of EBM was white, liquid gold.
In continuing desperation, I called my old antenatal teacher. She told me that many women who had trouble feeding in hospital worked it out when they were relaxed and comfy in their own homes, and when the pressure was off. She told me about re-birthing in the bath. She told me to curl up in bed naked with my baby. She told me to get my top off, keep it off, and curl up on
the sofa for some skin to skin. She told me “my baby, my way” and to use whatever position was most comfortable to me.
We tried rebirthing. I cuddled up to her naked and I discarded my tops. Three days later, I finally succeeded in feeding her using the nipple shields and I was absolutely elated. After two days of feeding her with the shields, we stopped cupfeeding. Finally, at nine days old, she was exclusively breastfed.
Elation lasted for a week before the reality of the shields hit home. They were a terrible faff, and I’d been scared off by stories of diminishing milk supplies. I became irrationally jealous of people who managed to feed “bareback” – what did they have that I didn’t? The midwives advised me to start weaning her off the shields as soon as possible. At two weeks old my poor baby had been
tube-fed, cup-fed, bottle-fed and shield-fed and now they wanted me to change it again? I tried to go without a few times but it was a no go. She would neither latch nor suck. We were back on the shields almost as soon as we were off them.
Eventually, when I had some calm and privacy around me during the third week of Molly’s life, I breastfed properly three times in a row without the shields. Instead of being more difficult without them, it actually felt less pinchy. Remembering the midwife’s advice not to feed without them initially when I was tired, I popped one back on to feed her that evening but she refused to latch. She pulled terrible faces until I put away the shield, and she fed contentedly. It wasn’t comfortable, but it was working.
Exactly three weeks after her birth, we breastfed successfully for the first time using no artificial aids.
She fed voraciously from then on. She would take over an hour to feed, and fed every 90 minutes to two hours. I would get approximately half an hour to rest between feeds. I continued to express daily and about once or twice a week James gave her a bottle of EBM when I felt I couldn’t do any more. At the time it felt like I was failing and I longed to feed her exclusively for a week without having to give her EBM.
I never experienced the cracked nipples that some people endure, but feeding was certainly uncomfortable. The feeds could be toe-curlingly needle sharp, but I stuck with it. In indignation that she was feeding around 20 times a day when the NHS booklet told me to expect to feed between 8 and 12 times, I marched along to see a Health Visitor and demanded help, but they watched a feed and told me all was normal.
It wasn’t long before I noticed she made a clicking sound when she was feeding. At 7 weeks I went to a drop in clinic but again was told all was well, there was no sign of tongue-tie or any oral problems and that she just needed “to grow a bit more”. I started to take Molly to an osteopath in the hope that she’d become more settled, and booked an appointment at the doctors. I was sure something was wrong. At 8 weeks, her symptoms were diagnosed as reflux and she was put onto medications to help her. True enough she started posseting less, but she wasn’t feeding any less frequently and wasn’t any happier.
She was only ok when she was feeding. In between she would scream and it was impossible to go anywhere or do anything. I booked ourselves onto a baby massage course and, as with any outing, I would feed her until the last possible minute before I had to leave the house, listen to her scream for the entire car journey, then start feeding again as soon as I arrived at my destination.
I couldn’t go further than 20 minutes from home. At most of the baby massage classes, I didn’t do any massage. We sat and fed while we watched everyone else. I figured that at least we were out of the house. On one occasion I tried to do the relaxation exercise at the end of the class. All the mothers lay down calmly with their gurgling babies while mine screamed. In pity, the instructor
took my baby and walked her round to try to soothe her while I relaxed. Instead I lay there and cried. What was wrong with me and my baby? Why was she never happy?
I wouldn’t say we properly established breastfeeding until three months. Her feedings had stretched out by then, and suddenly I felt like I didn’t have to concentrate on breastfeeding anymore. I was no longer counting the days before I could start weaning her, and it no longer hurt to latch her on. In fact it was a breeze. I used to envy bottle feeders the ease of making up a feed
without the discomfort and fuss of breastfeeding – now I realised how nice not having to get up in the night to make bottles was.
The feeding experience contributed to the crashing post-natal depression I suffered from, and I made the decision not to have any more children. When I unexpectedly found out I was pregnant three years later, I felt devastated. Not only was I terrified of repeating those first three months, but I knew that this time there was a significant chance I’d fail at BFing. How could I dedicate that
amount of time to feeding a baby when I had a pre-schooler to look after?
Everyone reassured me that the second baby would be easier, but I was apprehensive.
When my baby boy was born, it took him 16 hours to latch on. He seemed to be feeding well, but the old pain started coming back, and all of it reminded me too much of how things had been with Molly. But by this time I was a doula. I knew where I should be going to get help, and on day five I went and got it. This time the tongue-tie was spotted and I made an appointment to have it treated on day 6.
The Lactation Consultant diagnosed a 75% tongue tie when she saw my baby. She described all the standard signs of tongue tie and the types of behaviours associated with it, and it all sounded too familiar. I shyly asked her, just out of interest, to check Molly’s tongue while she was there. I needed to know. And there it was: another 75% tongue tie.
Maybe I should have been relieved, but I was just angry. I never felt I bonded properly with my daughter, and a large part of that was down to the problems we’d had feeding. All that could have been spared, and a life-times relationship could have been different, if she’d just had that one tiny procedure.
On the positive side, I found out what breastfeeding SHOULD have been like. My son fed with difficulty for the week following the procedure, but after that it was improvements all the way. He would feed and be satisfied. I would have longer than 20 minutes between feeds, so could spend some essential time with my daughter. Feeding was comfortable and even enjoyable. I no longer had to rush around doing errands with a screaming baby if I ever had to go out of the house. And it made a hell of a difference to our bonding and to my overall perception of breastfeeding and life with a newborn.
I remember telling my BFC that I had never enjoyed a single feed with my daughter, and I still feel heartbroken that I resented every feed. My only consolation is that she’s seen me have a successful feeding relationship with my son, and perhaps that will have slayed a few demons for
Here is a new addition to the story circle from Sarah
I was in awe of this amazing little person doing what was so natural with such ease I thought I had it cracked.In recovery I asked a midwife if he was latched correctly as I wasn’t sure it felt right and was a bit uncomfortable, I was told that no it wasn’t quite right but not to worry he would figure it out and there was no rush! I felt discouraged and also angry that I had asked for help and was just having my concerns ignored. My mum then snuck into delivery and helped me get the latch correct and so we continued, again I felt I had got it right.After a horrendous experience in the post natal ward and no further help with breastfeeding I was released the next day.On day 3 my milk ‘came in’, once again I felt proud and almost smug my milk had come in so quickly, I had fed on demand and he had barely left my chest unless to be changed.This was where it got difficult I started to get sore nipples, they were cracked and had started bleeding. When the midwife visited I asked her to check the latch and position and she said they were great. I showed her my nipples and she said they just needed to toughen up and to let them air.I continued and followed her advice, the pain got worse and I started dreading every feed. My nipples were bleeding and I felt like they were covered in cut glass.On my 10 day visit I waited for the midwife to ask again what was wrong and she didn’t show up, in tears I rang a helpline and they asked about the latch and positioning which again sounded right.By this point I couldn’t physically put my son to my breast and my mum or husband had to latch him on while I pulled at my hair, kicked my feet and grimaced with tears rolling down my face. I didn’t understand why I found it so painful, everything I had read said it should be pain free if you were doing it right. Therefore I either wasn’t doing it right or I was a wimp.
I honestly thought I was a wimp and I just wasn’t designed to breastfeed normally. After 2 weeks my husband was ready to go out and buy bottles and formula as he couldn’t watch me be in so much pain. My mum was desperately searching the Internet and we resorted to trying breast shields. Many phonecalls later to all supermarkets in a 30 mile radius at 1am in the night resulted in having to wait for the shops to open the next day. I remember the feeling of utter hopelessness, My body was letting me down again. I hadn’t been able to give birth naturally and now my body was too much of a wimp to let me breastfeed.
The shields were a god send and even though every feed still hurt I didn’t cry every time and my poor nipples that were missing chunks had a chance to try and heal.
At 2 weeks I finally got to a breastfeeding support group and the lactation consultant saw my nipples and watched me latch on and again said the position and latch looked ok and asked if he was tongue tied. In my mind I assumed I would have been told if he was tongue tied or it would be really obvious so I said no! She said she could check after he had fed but then after seeing all these other mums feeding so easily I felt even more depressed so just left.
I continued feeding and got treated for thrush, I was still in pain and now used the shields at every feed and was convinced I could never feed without them. I got insanely jealous seeing women feed ‘bareback’ And just felt cheated and useless. How would I ever be a good mother of I couldn’t even breastfeed properly.
Finally I went back to the support group when he was 10 weeks old and broke down in tears that it was still hurting and he was checked and found to have a posterior tongue tie. I was so relieved! It wasn’t my body letting me down!
We got referred and the tongue tie was cut a day short of him turning 3months. We still used the shields until he was 5 months old as by that stage he had got so used to them and to re learn how to breastfeed without them.
Im proud to say he is nearly 9 months and still breastfeeding bareback and I have no intention of stopping any time soon.
I am still dealing with those initial feelings of failure and my nipples are still recovering and probably never will completely but they serve as a reminder of our journey and I’m proud of myself and my body.
New study on the outcomes after tongue tie division:
Background and Aims Breastfeeding is considered the golden standard in neonatal nutrition. One of the complications encountered in breastfeeding is tongue-tie (ankyloglossia), which may eventually lead to aborting breastfeeding. Frenotomy is considered a harmless and effective procedure for ankyloglossia. However, different researchers question the positive effects and emphasize the possible complications, especially when the procedure is performed without general anaesthesia. Aim of our study is to describe the outcomes of frenotomy in neonates.
Methods The data of a series of 166 breastfed neonates (110 male, 56 female) with ankyloglossia and breastfeeding problems under 3 months of age were collected. In these neonates frenotomy was performed between January 2008 en 2012 by an experienced paediatrician in the outpatient clinic without general anaesthesia. Parent(s) attended the procedure and (breast)feeding was given within minutes after frenotomy. One week after frenotomy, data on complications and effects on breastfeeding were collected by a telephone interview with one of the parents.
Results 34 Neonates (20%) were lost to follow-up after frenotomy. Of the remaining 132 neonates, 117 (89%) reported improvement in breastfeeding (better latch, less nipple pain or fully breastfed). 12 (9%) Reported no improvement. Improvement was controversial in 3 neonates (2%) because of additional problems affecting breastfeeding. Minor complications were reported in 5 patients (4%). These consisted of need for a mild analgesic or minimal bleeding up to 1–2 minutes. No major side effects were reported.
Conclusions Frenotomy without general anaesthesia is a safe and very effective procedure in neonates with tongue-tie experiencing breastfeeding problems.
Here is a story from Helen
I had a very difficult time breastfeeding my daughter. I had never
heard of tongue tie, and it was never suggested to me despite me
seeking help from various sources. Looking back, it seems obvious. She
was very unsettled in general, was tense and wriggly during feeds, and
made clicking noises. She would often scream and writhe around after a
feed, and struggled to bring up wind. Feeding was uncomfortable for
me, and she could not flare her lips out. She didn’t settle to sleep
well and barely seemed to nap, yet was obviously tired. She had green,
frothy, explosive poos. I regularly suffered from mastitis and blocked
ducts, and became very depressed.
To help me cope, my husband gave her a bottle of expressed or formula
milk every evening, which did seem to settle her. We also reluctantly
gave her a dummy to help her to sleep, and this made a huge
difference. Breastfeeding slowly improved over the first year, and she
self-weaned at 15 months, when I was a few months pregnant.
I was determined that things would go better second time round. My son
was born at home, a straightforward delivery and a healthy baby. We
spent a long time relaxing together, skin-to-skin, and while he bobbed
about and rooted, he did not manage to latch on. In the end I had to
express and feed him with a syringe for the first few days. I had a
lot of support from my doula, from my LLL leader and from fellow NCT
students. He made brave attempts to latch on, but could not form a
seal and would slip straight off. It was not usually painful, but felt
’scrapey’, and my nipple would come out blanched and squashed.
Like my daughter, he was fussy, tense, screamed a lot – but he was
worse – he wanted to be held upright all the time and did not sleep
for more than an hour or two at a stretch. We were both miserable.
Tongue tie was suggested – at first I was resistant to the idea but
when I read more about it, it all made sense. We were referred for a
division, and a posterior tie was diagnosed and snipped. His feeding
and behaviour improved, but it then went downhill and we found the tie
had re-attached. A second division did not seem to help at all and I
resigned myself to another terrible breastfeeding journey.
He was displaying all the symptoms of silent reflux, and while I
suspected this was a result of his poor latch, tongue tie division had
not resolved our issues so I decided to see the GP. He was prescribed
medication, which he continued to take for the rest of his first year.
I also tried cutting out dairy, caffeine, and other suspect foods, but
could not see any obvious difference. He was also referred to a
paediatrician, who did not believe that tongue tie affected
breastfeeding, or that there was any link with reflux.
Like with my daughter, his latch gradually improved over the first
year or so. To give him the best chance at breastfeeding successfully,
I had decided not to use any bottles or dummies – we did try once with
a bottle but his feeding was no better and he took in a lot of air and
very little milk. I persevered through repeated bouts of mastitis and
engorgement, screaming and sleepless nights.
Telling you this story, I feel a great sense of sadness and
frustration. While I had a lot of support second time round, the
health professionals involved did not seem to agree on what was going
on. I was fobbed off with ’he is gaining weight well, so he must be
fine’. I spent a lot of time researching tongue tie and reflux, but
felt very much on my own, and torn between conflicting opinions and
advice. I was constantly stressed about what I should do for the best,
and worried about future outcomes for my son. Again, I became
depressed during this time and had to seek help from my health
visitor. I hate that I still do not know the answer, and I am sad that
we will not have any more children, as the prospect of another similar
experience makes it not worth the risk – the potential impact on my
own mental health and on my other children is too great. But I am
delighted with the children we do have!
My daughter is now 3 ½, sleeps and eats well and is very bright and
chatty. My son is 21 months old, sleeps well, talks extremely well for
his age, and articulates clearly. He is also breastfeeding very
This story is from Siobhan
I had a normal pregnancy my boy arrived at 41+3 after my labour not progressing and my son showing signs of pooing inside me i had a emergency c section. After waking up hours after the op i was told my son had ingested meconium and was in scbu he was also small(5pound11 witch was a shock as had been told baby was big later found out he had IUGR and was never picked up) he wasnt getting betting with his breathing so got transferd to nicu after a few horible days he was finaly breathing on his own and he got to finaly fed from me he didnt feed that well or very long but just fort that was just because he was small.
finally got to take my boy home a week and half later. He wasnt feeding from me very well but midwife came and said was just cause he was small and didnt have much energy ect i was demand feeding very often but he was stil upset after feeds i was once again told this was because of his size.
He wasnt gaining much weight 50~150g per week so i was told that i would have to start doing top ups with formula witch i was not happy about(since a very young age i have always said i wil breastfeed my child)but i did it as i wanted my boy to be healthy the formula helped a little bit but he stil wasnt feeding or latching well, this was very upsetting to me as i fort something was wrong with me, i had mentioned to plunket that i think something is wrong with his tounge as he couldnt suck very hard or move it much both she and my docter checked his tounge and said it was fine.
By this stage he stil isint gaining much weight and iv been told to up the amount of formula so upsetting! Finally at 3.5 months plunket got a lactation specialist,within a few minutes of lactation seeing my son feed she told me he was tounge and lip tied! So happy to finally have a answer she the told me he would be put on waiting list for laser sugery by this stage he was getting 250m perday of formula and my supply was getting low.
The day finaly came my son way getting his sugery after a quick few minutes it was done. I was so happy! I tryed to feed but he wasnt latching that great was told to keep trying it would improve it didnt after that few days and it was so painful for me to feed him that i ending up making a very hard choice that i would fully bottle feed him as i wasnt bonding with my son and would resent him when he feed from me,
he is now 6months old and is a happy chubby bubba. I just wish that his tounge tie would of been picked up earlier so i could of done the one thing i had always wanted to for my child.
A new study, published March 2013 on Mothers’ experiences of breastfeeding.
Understanding the Experiences of Mothers Who Are Breastfeeding an Infant with Tongue-Tie
A Phenomenological Study
Janet Elizabeth Edmunds and others> Abstract
Background: Tongue-tie or ankyloglossia is a congenital condition that negatively affects breastfeeding. The thickened, tightened, or shortened frenulum affects the infant’s ability to suck and frequently results in sore and painful nipples. Although several studies have investigated outcomes associated with treatment of tongue-tie, none have investigated mothers’ experiences of breastfeeding an infant with tongue-tie.
Objective: This study aimed to understand the breastfeeding experiences of women whose infants have tongue-tie.
Methods: A hermeneutic phenomenological design was employed. Data were collected using focused interviews and, following transcription, were analyzed in the phenomenological tradition. Ten women who presented at a breastfeeding clinic with feeding problems, and were diagnosed with tongue-tie, were interviewed on 2 occasions.
Results: The analysis revealed a common story of tension between the mothers’ expectations and the breastfeeding challenges they faced. Their journey was characterized by 6 distinct phases described in the following themes: Expectations; Something is wrong; Questioning, seeking advice, no real answers; Symptoms and perseverance; Approaching the wall—it’s all too much; and finally, Relief.
Conclusion: The women in this study described a somewhat harrowing journey, which was at odds with the natural experience they had anticipated. They encountered health professionals who were found to have limited knowledge of tongue-tie and its potential effect on breastfeeding and were unable to provide appropriate advice concerning their breastfeeding difficulties. However, following treatment with frenotomy, their breastfeeding experience improved dramatically. The reported incidence of tongue-tie is significant, and early identification and prompt and effective management would contribute to improved breastfeeding.
• Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
• Funding The authors received no financial support for the research, authorship, and/or publication of this article.
• Published online before printMarch 20, 2013, doi:10.1177/0890334413479174 J Hum Lact March 20, 20130890334413479174