Note: This post contains detailed information about my breastfeeding journey with my daughter who was born with a posterior tongue tie and an upper lip tie. I am writing about it here because when I was struggling with breastfeeding, I scoured the Internet, looking for women who had experienced the same issues and I clung to any skerrick of information I stumbled upon. What had helped? Was it possible that this breastfeeding relationship could succeed? Was I alone? Was I crazy? I found a few pages with relevant information, but not enough. I decided that I wanted to share my story here so that it may give other mothers hope that a less than perfect breastfeeding relationship can survive beyond one year. Apologies, as this is a long post, so grab a cuppa. I wanted to include lots of information for those of you out there who are going through the same situation and are looking for a glimmer of hope to cling to.
In December 2012 I gave birth to my precious first baby girl (I’ll call her G here). Labour didn’t go as planned and we ended up with an emergency C-section and we were very relieved when our G was delivered healthy and squeaking into this world. As a dietitian and nutritionist, I know how important breastfeeding is and was determined to breastfeed G as long as she wanted. I paid attention in my antenatal classes, practiced with a doll (so unrealistic compared with my wiggly worm of a newborn now I think about it!) and felt confident that I would be able to breastfeed my baby.
When I was transferred to recovery after surgery I positioned G near my boob and on she latched. I had noticed when she was placed on my chest immediately after her birth that her tongue looked a little unusual – broad and flat – but given my low level of personal experience with brand spanking new babies and breastfeeding in general, I didn’t worry and let her suck away for about 30-40 minutes. When she finally let go, my nipple was white and creased – like a new tube of lipstick – but thanks to the epidural, I couldn’t feel a thing, and combined with my post birth love bubble, I didn’t think much of it.
Over the next 48 hours I continued to breastfeed G. I started to notice that it was hurting me each time, and that G was not opening her mouth wide at all, nor was she putting her tongue down and forward to latch on. Combined with her just being a real wriggly newborn I was finding it impossible to get her latched on comfortably! Once on, she would feed for AGES. I told the midwives I was struggling, and they checked for tongue tie (abnormal attachment of the lingual frenum – the membrane that attaches the tongue to the floor of the mouth – which can interfere with tongue mobility and function[i]), helped with positioning as best they could and told me to persevere. I did. But we continued to struggle. The paediatrician came and looked in G’s mouth and also said, ‘no tongue tie’. I accepted that and put that option out of my mind. Instead, I assumed it was just my lack of breastfeeding expertise and hoped that things would start to improve as I got used to it. I had heard from friends that it could take up to six weeks to be pain free so I didn’t push the issue.
The midwives tried to help me latch her on… often saying it ‘looks fine’… even though it NEVER felt fine!!! After 3 days my nipples were a mess – cracked and bleeding. I was advised to express for 24-48 hours to give them a chance to recover and was shown how to finger feed G with a tiny nasogastric tube taped to my finger. At the same time, G’s bilirubin was climbing and she was looking a lovely shade of orange. I was told that unless I expressed enough milk to top her up her via the finger feeds that I’d have to give formula top ups. This upset me as I was so keen on exclusively breastfeeding my baby that to have my plans gazumped at such an early stage seemed unfair. I decided that there was no way I was going to let formula top-ups happen this early on without a fight so I pumped like a mad-woman every 2 hours for 20-25 minutes and was lucky enough that my milk came in and I could express enough for G. Her bilirubin started to drop into the safe zone the next day.
After finger feeding for one and a half days I tried G on the boob again. I desperately wanted to go home breast-feeding and needed to restore my confidence that we could do it by ourselves. I asked for a Lactation Consultant (LC) or midwife to be with me for every feed to help me out. I must say they did try – different positions, different advice, shoving G’s face on my boob, angling it this way and that, etc., but it never felt ok. I was advised that it was a simple case of allowing time for G’s mouth to grow…. I thought this was strange given she had a relatively huge mouth. Whilst in hospital I watched a few dvds on breastfeeding – thinking that surely I was just missing one small step and once I figured out what it was and how to do it the penny would drop and all would be A-ok. It was when I was watching these dvds that I realised that G never opened her mouth really wide, never moved her tongue or flanged her lips like the bubs in the dvds did nor did she flange her top lip. I started to wonder why but was repeatedly told that I simply needed to work on attaching her and wait for her mouth to grow. In the back of my mind alarm bells had started to ring but I tried to ignore them and told myself that it was just going to hurt for a while but we would get there eventually.
So off we went home with a tube of Lansinoh in hand. Over the next week we struggled through feeds…. however, whilst feeding still hurt like hell, the cracks started to heal and, due to my oversupply, G was able to feed for only short periods and get enough milk. At our mums’n’bubs clinic the following week, G had gained weight and so we assumed we were on the right track and that it was simply a case of ‘learning to breastfeed’.
Unfortunately however, after the clinic things did not continue to improve … in fact, they worsened. On Christmas day I was distraught – feeding was agonising and G has started to feed for longer and longer, and I struggled to attach her. I Googled ‘attaching/latching’ like mad, convinced it was my fault some how, and I latched, unlatched and re-latched her over and over and over again – trying to get a comfortable latch where my nipples weren’t being squished and scraped and where G wouldn’t continually slide off my breast. I felt like a complete failure, I was devastated – not only had I failed at giving birth naturally but now I couldn’t breastfeed my baby girl without wanting to scream in pain. This was not the blissful post-birth breastfeeding love-in that I wanted.
At the behest of my husband, I called the Australian Breastfeeding Association helpline at 7pm on Christmas day – ruining some poor volunteer’s dinner – as I sobbed down the line. The volunteer supported me as best she could and gave advice to keep trying different latching positions e.g. latching standing up looking in a mirror. I hung up feeling a smidge better. Miraculously, the next feed I did as she suggested, latched G standing up looking in the mirror and she latched beautifully and the feed was comfortably. I was ecstatic. Perhaps I just needed to do that over and over again to get the hang of it. And I did. But I was not so lucky… that comfortable feed and decent latch was a complete fluke, never to be repeated. I was once again confused, upset, and frustrated.
During this time I went to a GP for advice – she looked in G’s mouth, saw milk residue and diagnosed thrush. Woohoo! – I thought – finally a reason for all the pain! We both started Daktarin treatment that day but over the next week I did not once notice a reduction in pain. I did my own research and asked for a prescription of Diflucan (a stronger, oral treatment for thrush). That too made minimal difference.
I realised I needed more help. I called in a private LC. She came at short notice on the Friday after Christmas and spent three hours with me trying every trick and position she knew. Nothing helped. At the end of the session I thanked her but told her that none of her advice had helped and it was then that she noticed G’s tongue moving abnormally when she was crying with exhaustion, hunger and frustration. She did the Hazelbaker Assessment and thought that perhaps G had a posterior tongue tie (PTT), but she couldn’t be sure. (A posterior tongue tie is located in the posterior area of the tongue. It is poorly understood and harder to diagnose as it can be located sub-mucosally and often must be felt – as opposed to visualized – to be diagnosed[ii]). She said she would email another LC who was experienced with tongue ties with some video footage of G to get her opinion. I was concerned, but hopeful, all at once – perhaps this was why we were having such a tough time?? The new LC looked at footage of G’s tongue moving and said that there did appear to be something unusual in her tongue and mouth movements but she would need to do a proper assessment. I took this as my cue to jump on the phone and call her (Ms. B) to book an appointment.
Over the weekend I researched on the Internet all about tongue ties. The more I read, the more confident I became that this is what G had. I also started to hope for a magic cure with one small snip based on the experiences I read about online. We drove the two hours to the appointment with Ms. B and she watched G feed, felt her suck, felt inside her mouth, and asked us about our experience thus far. She felt that there was some kind of restriction in her mouth and that it could benefit from frenulum release. We also noted that there was an upper lip tie (ULT – a remnant of tissue that attaches the midline of the upper lip and the gum that can interfere with lip mobility and function[i]), but Ms. B did not think this needed addressing at this stage. Ms. B also gave us lots of help with tailoring positions for attaching G comfortably. It turned out that the generic advice I’d been provided earlier was not what G and I needed at all, and was a hindrance more than anything. She also recommended finger feeding G expressed milk top ups using a syringe and our finger (see image below). By this stage I was already pumping several times a day as I knew my breasts were not being drained properly, and G was still hungry even after feeding for 20 minutes each side.
Luckily we were able to get in to see a Doctor that snips tongue ties that very afternoon after our appointment with Ms. B. He felt inside G’s mouth and immediately agreed there was a restricted frenulum that he could cut. He bundled her up and took her away. I waited nervously, but excitedly, hoping beyond hope that this would be the magic fix we needed to set us on the path of a blissfully pain free and effective breastfeeding relationship. When G returned she was crying but I put her to the breast straight away and she started feeding, her tears drying up quickly. The Doctor asked how it felt… and trying to be optimistic, I said… ‘Maybe a little bit better’ but the honest truth was that it felt pretty much the same. Shallow. Pinchy. Sore. The words the Doctor used gave the impression that it should feel much better straight away but, alas, that was not the case. We left and drove home. We did the exercises Ms. B suggested and I kept on pumping after every feed and doing finger feed top ups. I started to keep a record of each and every feed – amount of expressed breast milk fed, pinchiness, pain, creasing, latching, etc., as I wanted to be able to assess progress as objectively as possible. After a week I really felt there had been no improvement. I called Ms. B and the Doctor and we agreed to come back up the next week to have another look.
So when G was 4 weeks old, up we went to Brisbane again. Ms. B helped again with the positioning and the Doctor made a deeper revision. I was actually quite scared when I saw it as it looked so deep compared to the earlier one! He was sure, as was I, that this would do the trick. He did not want to cut G’s ULT as he felt this made minimal different to breastfeeding pain and success. The feed immediately after the revision felt unchanged, but by now I knew, based on my research and speaking with Ms. B that it would take time for G to learn to latch and suck properly with her ‘new tongue’. I cried on the way home all the same – I felt incredibly guilty for having put my precious bundle through another procedure without having a guarantee that it would be a complete success. But at the same time I felt like I wanted to do this to give her the chance to breastfeed successfully.
At home I did the gentle stretches and swipes religiously, to ensure no regrowth of the tongue tie. I hated them. G hated them more. But she was always easy to get a smile from afterwards so I prayed that we were not doing any permanent damage due to trauma. Feeds improved a bit, then became worse before getting a wee bit better. We went to cranio-osteopathy each week for the recommended bodywork – sometimes I felt this helped, other times I noticed no difference. Progress was so slow and minimal that I often despaired that I had made it worse or seen no/minimal improvement even with the second revision. At times I was inconsolable – sobbing, angry, silent, frustrated. I felt like my heart was breaking as all I wanted was to feed my baby the way nature intended and in line with my personal values, and it was still so damned painful and hard. I was being ‘encouraged’ by various people (family and health professionals) to just feed with formula and give myself a break. I wouldn’t have a bar of it. I had done some research and knew that even though swapping to formula and a bottle would reduce MY pain, it would NOT assist G’s oro-motor development the same way that breastfeeding would, and I wanted to give her the best start possible.
I went along to G’s six week check up with her Paediatrician. It was horrible. He told me (in his opinion) that tongue tie didn’t impact breastfeeding, that PTT’s didn’t exist, and basically made me feel like a fool for even pursuing the tongue tie procedures. I left in tears and his words set me on a spiral of guilt, despair, anger, and sadness. At the same time as feeling devastated, I also felt a flare of indignation – how could this MAN be sitting there discrediting my painful experience breastfeeding – I wanted to attach G to HIS nipples for 40 minutes every 2 hours, and then pump HIS breasts for an additional 20 minutes after that each and every 2 hours and see if HIS opinion changed at all! Needless to say, I have never been back to him.
I went back to my long term GP. I realised that at this stage I was not coping. My mother and husband were doing everything at home. My mother had come to stay for a week or two and five weeks later was still there – cleaning, cooking, shopping, nurturing, being an awesome mum. Still, I felt trapped, alone, and inadequate. I felt sad a lot and with that came extreme guilt that I was not the happy, loving mother that I wanted to be, and knew that I could be. I recognised I had Post-Natal Depression (PND) and asked my GP for antidepressants. She said ‘No’ (!!! unbelievable hey!!) She didn’t even perform the 10 item questionnaire to see whether I scored as having PND. Instead she wanted to check my bloods to rule out nutrient deficiencies… (umm, hello… I am a Dietitian… my diet was the only thing that was in tip top shape at this stage as I love food and when I am stressed or tired, I tend to eat rather than starve… as well I had my mum and hubby making me healthy meals every single day!). When I explained that the pumping, feeding, supplementing, settling schedule was leaving me no time to recover or rest, she poo-pooed me saying ‘what do you mean, you should be able to pump 2 full bottles in 2 minutes… you must have a slow let down’. I am not a violent person but I wanted to hit her. Instead I sat dumbfounded that this person I was turning to for support and advice was uttering such unhelpful, damaging words. She also told me to treat myself for thrush again without even looking in G’s mouth or at my nipples. Needless to say, I have since found myself another GP.
I became obsessed with finding out everything about tongue ties and lip ties. I spent ages on the Internet looking at people’s stories, reading papers, looking at research, etc. My husband was concerned that I was going over the top and spending too much time and energy on it. For me, it was a way of coping. I am a researcher at heart, I like to know everything in detail and it also served to give me a glimmer of hope that somehow it would all work out in the end. I was in pain – painful breastfeeds combined sore nipples in between feeds, nerve pain, vasospasms in between feeds, multiple blocked ducts, a few cases of mastitis, etc. – and I believe that that played a significant role in me searching for answers and information! Looking back with 20/20 vision, I can see that I was a bit obsessed but that was all part of my experience and how I generated a degree of understanding and, eventually, acceptance.
When G was about 8 weeks old I found myself a new GP (number 4 on this escapade). She was brilliant. She listened to me with an open mind, was interested to learn more about the PTT diagnosis as she did not know much about it, diagnosed me with PND and prescribed me a low dose antidepressant that is well-tolerated in breastfeeding and checked G and I for thrush. She assessed that rather than nipple thrush, the pain I was experiencing was due to ongoing nipple trauma. To be fair, Ms. B, my LC, had suggested this when I first saw her at 3 weeks post-partum – that my nipple pain was related to ongoing trauma and associated vasospasms. Looking back I see that was reluctant to accept that as I felt like I needed (wanted) something that was ‘fixable’ with a cream or medication.
I had several Skype consultations with Ms. B over the weeks following the second revision. These sessions gave me hope when I felt hopeless and on more than one occasion I SMS’d or emailed Ms.B in a panic that it was all going to fail. During this time, I continued to keep notes on each and every feed and whilst there was improvement, I was not pain free and was still having to top G up with finger feeds of expressed milk. I continued to research tongue and lip ties and started to feel that G’s ULT was indeed a contributing factor to our ongoing problems. I also could feel a restriction under her tongue still. I spoke with Ms. B about it and we decided to wait until she was at least 8 weeks old (4 weeks after the 2nd revision) before considering a 3rd revision.
At about 9 weeks I made the hard decision to have a laser revision of G’s PTT and ULT with a dentist in Brisbane. I told myself it would be the last one. My husband was supportive of my decision but said it was ‘up to me’. I really struggled with that as I felt the weight of this decision was massive and didn’t want it to be solely my decision. I know that as a supportive, understanding, husband he felt he should leave this decision up to me as it was my pain and my desire to continue breastfeeding that was driving it, but I was not able to face making the decision by myself. We had an emotional discussion, covering all the pros and cons, and decided to go ahead with the laser revision. I knew that the dentist we were seeing had unusual aftercare practices and was not Ms. B’s recommended provider. However, I felt that laser would be a better option for the ULT, as opposed to scissors, and planned to follow Dr Kotlow’s (an American laser dentist largely regarded as a leader in the oral tie field) & Ms. B’s methods of aftercare instead. It was not nice hearing G scream during the procedure and I was not allowed to be in the room to comfort her – something I will always regret and now consider to be unfair. Regardless, when G came out, she quieted immediately, breastfed and fell asleep. It was the first time post-revision that feeding felt a whole lot better. She was not munching. She felt gentle. I could flange her lip fully. I was ecstatic. Feeds were great for a few days and then, as per usual, became worse for a few. Gradually over the 10 days post procedure, G’s feeding improved. For the first time ever, I had no pain on my right side. Twelve days after the laser treatment we had a medical scare and we spent about 24 hours in hospital. G had experienced what was thought to be a reflux-induced laryngospasm in the middle of the night and this caused her to look as if she was fitting – struggling for breath, stiff as a board, with spittle coming from her mouth. The ambulance wanted to take her in just to check if it had been a seizure. We performed the stretches on her ULT and PTT sites less than normal on this day – perhaps 3 or 4 times. The next day I noticed that there was reattachment of both sites, and with that, feedings worsened again. I was devastated. I blamed myself 100% for not being strong enough to stretch the sites fully, for slacking off for that one day when she was not well…. Etc., etc., etc..
Back to Brisbane we went the next week to see Ms. B and the dentist. Both could see the reattachment. The dentist pretty much made me feel as if it was my fault because I had made a conscious choice not to follow her strenuous stretching protocol (I had done so as it was not in line with other dentist’s recommendations and I wanted to avoid creating oral aversion). Who knows what caused it? I sometimes think that maybe the stretching/interfering with the wound site that I did do may have been too aggressive and caused inflammation and irritation leading to scar tissue. Or, it may be a genetic thing where G’s scar tissue forms more readily than other babies, predisposing her to reattachment. I don’t know.
Despite the reattachment, we were still better off than before the 3rd revision – I think it was predominantly because we had the ULT revised – again, who knows? We decided to let things go for the time being and just wait and see how G progressed. We knew that 3-4 months is a time of natural changes in the infant’s oral anatomy and wanted to see what these changes did to her latch and sucking pattern. It was around this time that I made my big mental leap of acceptance – accepting that breastfeeding was unlikely to be the perfect, dreamy experience that I had expected. Could I cope with that long term? I decided that I could and that I would try to accept the situation as our ‘normal’ and seek pleasure in it as it was – things like being mindful of how the experience allowed me to be very close to my baby girl and give her lots of cuddles, looking into her eyes, admiring her eyelashes, and feeling her soft hair on my arm or chest. I also felt content that we were still able to breastfeed at all as I know some mothers and babies in similar situations cannot.
Breastfeeding became tolerable, but never completely pain/discomfort free. It continued to be scratchy/irritating on my left breast (like sandpaper) and scratchy and a pinchy on my right breast. I was coping just fine and I was gradually able to stop supplementing her feeds with expressed milk and at about 3.5 months of age I was able to stop pumping altogether. Together G and I figured out a couple of positions that seemed to create the least amount of discomfort: cradle hold with G in an open body position on the right, more closed in towards me on the left, and side lying with my arm under her head, and, on the right side only, a strange version of laid back nursing! Importantly for my emotional wellbeing, I learnt how to feed in public without getting stressed out and worrying about being without a complicated array of pillows.
So we waited and watched, quietly observing her tongue movements and her feeding skills. At 5 months I made contact with a Speech Pathologist in Tasmania who is regarded as one of the leaders in the oral tie field. We did some Skype sessions and together we decided to gently start with solids using Baby Led Weaning[iii] (a style of weaning an infant onto solid foods using family-style foods that focuses on infant self-feeding using finger foods and utensils when age appropriate). I had always intended to use this method of solids introduction as it is a style of feeding that makes sense to me based on my understanding of infant development and importantly, suited G’s independent and determined temperament very well. I started, once again, to keep notes on G’s solids feeds. I noted what foods she struggled with and when – coughing, gagging, food refusal, etc. Progress, as I expected, was very slow at first. G was keen but struggled a fair bit with moving food around in her mouth. There was a lot of gagging and several choking episodes. I managed to keep my cool almost every time – only swoop and help dislodge some food from her mouth when it was clear she was in distress. My training as a paediatric dietitian, along with my experience working in an infant feeding clinic has really come in handy. I knew that gagging was a necessary part of learning how to eat and therefore did not fret with each gag. Still, she was getting some solids down and the gagging and choking, in the main part, left her unfazed. I started to offer her sips of water from an open cup. It was at this time that I started to suspect that the ties were still restricting G’s oro-motor movements. She struggled for a long time to keep a bolus of water in her mouth, whether drunk from a sippy cup, a straw cup or an open cup.
Our Speech Pathologist gave us exercises to do to help G develop her oro-motor skills and awareness of her mouth and tongue movements. We kept going with breastfeeding, solids and sips of water. Around 8 months, progress with solids had been quite slow and I remained concerned about her poor water drinking ability. We made the heart breaking decision to travel to Sydney to see another, more experienced, laser dentist to look at G’s ties. We had been advised that it was best to do it before 8 months or after 18 months, for developmental reasons, by our speech pathologist.
It came as a surprise to us when the Sydney dentist did not assess that G’s tongue frenulum was restricted enough to be causing problems. He did agree that the ULT was an issue. It had reattached fully by this stage and was restricting her upper lip movement considerably. He commented that it was likely to cause dental issues in the future regardless of whether or not it was impacting her eating skills currently. He also assured us that if lasered completely, there would be no reattachment. Given our history of both ties reattaching, I had my reservations about that, but he was very confident. We went ahead and had her ULT lasered. He used a local anaesthetic. We stayed in the room this time with my husband holding her still. I found this procedure to be incredibly difficult to watch – G was screaming and sobbing – she hated being restrained and was petrified by her surroundings. Whilst she breastfed immediately afterwards, she took a lot longer to calm down than earlier revisions and the guilt I was feeling at this stage was significant. Had I made the wrong decision? What if it just reattached and all was for naught? Would she remember this traumatic event? How would it affect our emotional attachment? And on, and on, my emotional mind raced. My rational mind (and husband) reasoned with me that we had not made this decision lightly, that we had our baby’s best interests at heart, and that we had done ample research and consulted with the country’s leading professionals on this issue. Still, my heart was sad.
We did gentle lifting and swiping of the ULT wound site over the next 14 days. Her ability to drink water improved significantly during this time and she seemed to be doing better with solids too. However, around day 10 I noticed there was some reattachment. It was not all the way to the papilla but it was definitely there. My self-critical voice in my head was telling me ‘I told you it would reattach, why did you even bother, you are a bad mother!!!’ My rational mind was telling me not to worry as long as her oral function was not impacted; a bit of reattachment was no problem. The dentist agreed that the reattachment was quite high up and therefore unlikely to be functionally significant.
Around this time I had myself and G tested for the MTHFR genetic variation (myself via a blood test, and G via an oral swab). There are some people working in this field, as well as some discussion in online tongue tie forums, that points to two of the MTHFR variations being relevant to cases of tongue and lip tie, and in particular, to those that are prone to reattachment. I found it interesting that both of us do NOT have the MTHFR variation – so for us at least, it was not a factor.
Over the next few months, as we continued with baby led weaning, G got better and better at drinking water and was managing solids okay. She still, to this day, does big wincing swallows with certain foods – like she can’t quite manipulate it properly in her mouth to swallow it easily. She still gags and coughs more than I would like with some foods and we have had several quite scary choking episodes on tricky foods like corn thins, tomato, cucumber and larger pieces of meat. When she clicks her tongue I can easily see a very thick frenulum underneath her tongue – so whilst she can elevate her tongue, I strongly suspect it is somehow still causing her to have some swallowing difficulties. BUT…We will wait and watch over the next few months to see how she goes with eating before making any further interventions.
I am very, very, proud to say that G is still breastfeeding – in fact, at 14 months, she probably still feeds at least 7 or 8 times in 24 hours. Whilst breastfeeding has never become very comfortable for me, the discomfort I feel is tolerable. Some feeds I hardly notice it, but it is generally always there – a little bit sandpapery, a wee bit pinchy and there are always teeth marks and usually some blanching when she unlatches.
I count G and myself as lucky. We had a very supportive family and friend network that accepted my decision to persevere with breastfeeding. We sought and found (eventually) fantastic professional support and we had the resources to pay for it (a pretty expensive exercise – Dentists, Doctors, Lactation Consultants, Osteopaths and a Speech Pathologist!).
For all the mothers out there who are experiencing the same or similar problems, my heart goes out to you. It has been an incredibly difficult journey for me and my family to make and I know how draining, frustrating and guilt-inducing the whole process can be. My advice is to seek out empathetic and experienced health professionals and to do your own research to determine the path that is right for you. Don’t settle for someone’s opinion or advice if it doesn’t feel right for you and your baby.
Also, as a result of this experience, I have changed the focus of my PhD to now be looking at early feeding practices for infants and toddlers with oral anatomical abnormalities such as tongue and lip tie, cleft lip and cleft palate. Stay tuned – I will resume my research mid-year.