My baby’s tongue tie and our route to breastfeeding

This is my journey from our baby’s inability to breastfeed due to tongue tie (TT) to breastfeeding. I wish I had had more practical examples available to me when starting out on this and am therefore providing our story in the hope that someone might find it useful. Written in September 2019.

My baby was born by emergency C-section and straight after the delivery the nurses assisted him in finding the boob (by turning his head and gently pushing him to the right place). I was dazed and shocked after the op but trusted they knew what they were doing.

My baby however did not seem to be able to latch despite the help that was provided between the C-section night (born at 2 a.m. in the morning on Thursday ) and our discharge from hospital not two days later on Friday afternoon around 5 p.m.. During that time I made a concerted effort to get the lactation nurse to assist us as much as possible and to get breastfeeding.

I had not doubted that we would be able to breastfeed prior to the birth and just thought it would be natural and straightforward and that competent help would be provided as part of the antenatal support in the hospital. But I was wrong on this, very wrong.

Of course, when things did not work straight away I wondered if my boob was a difficult shape (very Mary Antoinette with small nipples on a half-dome) which made it more difficult for my baby to latch especially as they had become firm with the milk coming in. 

However, I also asked one of the lactation nurses who came around twice each day if it could be that my baby had a tongue tie and whilst they had a look, they could not be sure they said and generally seemed to know surprisingly little about the issue and no support was offered in this regard. I imagine there are few new parents who would even know about the condition in the first place. All in all, support was negligible and did not seek to address any issues with breastfeeding or their underlying causes but simply focused on positioning correctly.

During the time we were also hand-expressing like demons and feeding the colostrum to our baby with syringes. Not a pleasant task – it required a lot of squeezing of the breast that was painful at times. We were only discharged on condition that I attempt to bottle feed my baby and they supplied some milk in bottles with teats which my baby took without a problem.

With hindsight, I should have known better perhaps and read up  about going down this route and the ease and convenience that the bottle set-up seemingly creates as I was not aware of the potential difficulty to reverse it later on. Still, following the emergency C-section I also wanted no further stress for my baby so I am not sure what I would have chosen had I been in full knowledge of other options open to us. Probably, with hindsight, an at-the-boob set-up would have been best with the milk – formula at this stage – delivered through a SNS system (supplemental nursing system). 

On Saturday, I was able to have a visit from a lactation consultant from the local charity. She tried different positions and suggested the squeezing of my boob into more of a pointed shape to ease latching and a fuller mouth/latch by my baby. This was to no avail however and the consultant eventually looked at my baby’s mouth and suggested a tongue-tie to the back of the mouth and that another person in her extended team was qualified to look at this and diagnose it. This colleague was having her next practice on Wednesday after and so all that could be done in the meantime is to await that appointment. My baby would be 6 days old come Wednesday.

The lady in question hosts a breastfeeding cafe in the Borough and we attended. After the usual catch-up on the history to date, the lady looked at my baby and confirmed a tongue tie that ‘could’ interfere with breastfeeding (not all ties do so it will depend on each case). 

The next step was to decide on whether to ‘treat’ the tongue-tie. For me, this was no question since I felt very strongly that I needed to breastfeed my baby and as it wasn’t working, something had to be done as soon as possible. I was feeling very down probably in part because my breasts were not being emptied properly and thus perhaps signaling to my body that there was a problem. With the trauma of the emergency C-section, these were very hard days.

The woman from the cafe also provided more information on how to ensure that my milk supply was established by obtaining a hospital grade pump. I was not advised by the hospital – a London teaching hospital – (despite all our efforts to engage on the topic of breastfeeding generally) that this would be needed (in fact we were released with ‘breastfeeding established’ on my discharge documentation) to ensure milk supply. Once we had been informed, we actioned straight away and a Medela Symphonie was delivered on the 8th day post the C-section. I started pumping with this rather than with the Medela Swing which was not yielding any real results. Even then, the journey was slow and there was quite a lot of catching up to do. I started pumping irregularly about 6 times a day ( my routine became better soon after reading up on pumping) and this provided some relief to my body since at least now my breasts were being emptied out.

With regards to the TT, this is not a properly recognized medical condition. However, the associations of TT practitioners is available to cut through the fibre that attaches the tongue to the mouth floor and we wanted to get this done pretty quickly and therefore settled on the next available practitioner who would come to our house to undertake the ‘snip’ if a TT was diagnosed. This is a very odd process in that it seems little regulated and yet is an interference with a small baby that bears some risks …Anyway, the practitioner performed the procedure (cutting through the tie with surgical scissors) and we thought we were all set to keep trying to breastfeed. The snip was on day 8 post C-section. We were given a few exercises to do to prevent the tissues re-connecting and the practitioner tried to call us once to see how it was going. We did not speak with her though, missing her call, since we assumed that there was no need to as there were no obvious complications post the procedure. 

Whilst I continued to try to coax my baby to breastfeed, over the following weeks, I had little success with it. We tried lots of skin to skin and bathing and coaxing before bottle feeding. But we made very little progress with the one exception: as well as trying the bare nipple, I tried using a nipple shield to mimic the sensation of the bottle teat more closely. Sometimes (once every three days or so) my baby would latch, and from the milk in the shield it was obvious that he managed to extract milk, however, it would also run down his cheek and I wondered if it was effective i.e. if he was actually feeding. After a few weeks, we had a couple of days where he latched to the shield for repetitive ‘feeds’ but it seemed still that the milk was not being swallowed. And this proved to be correct – eventually my baby started crying post an attempted‘feed’ and would refuse to latch again. 

During all this time, I felt very low, desperate, indeed and would cry at least daily. For me, it seemed, breastfeeding my baby was imperative and I could not just give up and switch to formula. Other mothers may feel differently here but I was suffering. It was of course not clear if it was the breastfeeding problems that were causing this depression or if it was just manifesting with regards to it. I’ll come back to this further below. 

When it was clear that breastfeeding was not progressing, I decided to get a lactation consultant to see us. She confirmed that the TT had not been fully removed by the first snip and that in addition to the treatment of the tie, the baby needed craneo-osteopathy since his movement would have been restricted since the early weeks of his life and that he may also not have proper movement required for breastfeeding as a result of this. In fact, this was not only true for the tongue but my baby would always move his head to the left side and never position it in the middle/neutrally when on his back. If he moved it to the right side, he would not stop in the middle but generally he also had a strong left-side preference. 

The LC suggested to see a specific CO who specialised into the area and the treatment of babies as well as a children’s dentist who can successfully treat the sort of TT my baby had. We made appointments for as soon as possible with both and my baby had the second TT procedure on 1st July at 7 weeks old. He had his first CO appointment two days later. 

The LC also thought that our baby was struggling due to tight musculature with the Medela Harmony bottles and told us his feeds lasted longer than usual as a result. We switched to Lansinoh which we use now still.

The dentist was not sure if my baby would ever breastfeed given his age but successfully treated the TT and lip tie. The CO was curiously positive and this gave me a glimmer of hope and I can’t thank her enough for this. The LC also confirmed that it was still possible – she knew of cases of babies as old as 4 months that had started to breastfeed – but I struggled to see how it could still happen and more importantly nobody really explained how it might only perhaps suggesting that a baby would ordinarily be happy to breastfeed if there were no issues. The LC’s main point was that the baby’s muscles now needed to catch-up and that we needed to ensure we did the relevant exercises regularly. This resonated with me since I strongly felt that my baby’s mouth feel was wrong hence he did not swallow the milk which he had extracted when feeding with the nipple shield. Nonetheless it did not provide a step plan to breastfeeding which made it difficult to see how it could happen. 

By this stage, my baby was well established with the bottle and had a mild boob aversion in part because of all the negative experiences that we have had in the meantime. I was also back at work for a 4 week period from the 1st July and so it was up to my partner to do the exercises with our baby. These included stretching the area so the fibres would not reconnect (these were not pleasant), encouraging movement of the tongue and also to get him to finger suck to strengthen the musculature needed for breastfeeding. With this latter,  we had little success as our baby would still not suck readily and it was hit and miss. So we decided that we would finger feed him by using an SNS i.e. by rewarding the sucking effort with milk. Even this was very hit and miss and by partner tried it 1-2 times a day only prior to a bottle. We continued like this during July. During this time, by baby’s tongue mobility increased although his high-arched palate (often associated with TT and potentially restricting the nasal passage) did not change.

To overcome the breast aversion, we had started to wrap the bottle in a skin-coloured garment and were feeding right next to the nipple/by the breast. This way, the place started to have positive associations and the bottle itself was hidden. This is something we should have started earlier in the process but proved useful even at this stage. 

We did not really make any progress with the breastfeeding itself apart from one time in which I simply encouraged my baby to try suck from my breast with a nipple shield and he went for it inexplicably. This was 3 weeks post-op. On this occasion, the nipple shield then slid off and my baby, for the first time ever, ended up latched onto the boob and sucking vigorously from it in a way that felt right (my only comparator was of course the pump which I had been attached to 8x a day every day in the intervening period to supply my baby with bottled breast milk).

I was absolutely ecstatic since it proved that it worked and that he could do it. Now the question was how to repeat it and I turned to a friend and the LC for further advice. Both suggested to continue coaxing and so we did over the next couple of days. However, there was no repeat experience and so I discussed more drastic measures with my partner because I was suffering and it was not okay for me to pump and bottle feed. The apparent ease of the set-up came with a high cost – my suffering (I remained absolutely desperate) but also probably limited sustainability of my 8x a day pumping schedule which included two night pumps. And so we decided to go cold turkey and deprive our baby of the bottle.

The decision was based on the following: a) we knew he could do it from a few days ago and b) we had seen how a finger feed could be transferred to the breast once the sucking was established in a video and it seemed eminently possible to do it (so simple, why were we struggling so hard for all this time?). So our plan was to do exactly this; start with finger feeding and then transfer to the breast which had been ‘rigged up’ with the SNS and nipple shield to make it similar to a bottle at first. Luckily my partner had done finger feeding with our baby as part of the exercises and he actually took to it quite well this time around. We had instant success with this set-up and managed to transfer him over with a bit of clever positioning of the baby during the finger feed and my breast essentially being right next to it so that one could be swapped for the other without much interruption. We repeated this during all the day feeds and were prepared to continue at night. However, it was not successful and so during the night, we reverted to the bottle. Of course, with the set-up, the milk was at all times provided by the SNS and we used the biggest tube for easy flow from it. This must be mounted on the outside of the nipple shield to work (please note!). It also meant that I continued pumping. 

On day 2, we still needed to start off with the finger feeding until sucking was established initially but during the day we were able to just do the breast (with shield and SNS) and this was also successful during the night. It required a fair bit of faffing though because the SNS tube have to be attached to the breast with tape so I kept bits of tape ready stuck to a light by my bed and the SNS filled with milk in a cool pack (we never heated the milk up, the same for bottles and bottle-fed formula which at least took one element of faffing out of the equation and the baby seemed just fine with it). However, it felt like massive progress pretty much a month after the op and a real sign that it could be done and we could get there. 

On day 3, I was doing at the breast feeding with shield and SNS unassisted. This was a Monday. We continued like this for the entire week at the end of which, I switched down to the medium tube provided by the Medela SNS. And after another week, to the thin tube. I also started to build in an initial delay (the tube supply can be cut-off) so that it mimicked a natural let-down. 

Of course, my baby was receiving ‘dual’ fuel during this time because the SNS and my breast were supplying milk so another thing I started doing was to stop the SNS supply mid-feed so that all milk was effectively from the breast. I also started slipping out the nipple shield once the sucking rhythm was established so that he was on the bare nipple. And this was actually the next step – going without the shield – prior to removing the SNS in its entirety. I started doing this regularly mid-feed and ended up just having to start off on the nipple shield before also being able to do away with it. This then left me with a small tube stuck to my nipple which I was unsure how to remove as a final step (although I could have imagined playing further with the supply) and worried about. Again there seemed no guidance anywhere on how it might be done which I  would have been able to follow or even reports from others on how it was done. I needn’t have worried though since this was not an issue at all and somehow the tube just became superfluous as my baby had learned how to breastfeed in the meantime. The whole process took about 4 weeks – I was going slow since I was so glad that me made this progress and did not want to jeopardize it – and from September, we were breastfeeding unassisted. 

Of course, during August, I had to manage the SNS supply for which I continued to pump and the supply direct from my breast. At times, this was probably not perfect and may have led to some ‘fussing’ that I interpreted as undersupply during use of the small tube. I was over-pumping although phased it out almost by the end of August. However, this was not really a big problem except for the timing of pumping and feeding since I knew I could produce 1.4l easily and my baby only needed 800-1000ml. We amassed a big freezer-stash as a backup which we still have. We’ve donated some to other mothers and that’s been very nice to be able to help in these difficult times for them.

I continued to breastfeed for September and October but went back to work part-time in mid-November when my baby was 6 months old. We reverted back to a bottle and expressing (much easier and faster now) for the feeds for which I was not around and on days that I was working a full day, my partner and baby meet me for a lunch-time feed. 

The return to work was anxiety-laden but I needn’t have worried (I am writing this at the end of December) as my baby seems fine having both boob and bottle now gladly returning to the breast when I am around.

Incidentally, my depression also lifted almost completely with the success of the breastfeeding – there was at least a strong link. The remainder I manage through jogging and I just have to accept that I am not the person that I was before childbirth in many ways. Having a baby changes you in ways that are hard to predict and know before….it is a journey difficult to anticipate.

Breastfeeding/pumping has helped in getting my weight back to somewhere near where it started although I still have about a stone to go after 7.5 months. The weight just keeps coming off to to the high overall demand.

I love being able to breastfeed my baby and am very proud of my persistence and our achievement. I love the closeness and comfort that it provides for both of us and the soothing effect it has at night. I do not as a result understand how anyone could give it up voluntarily….

During this time, we also keep up the Osteopathy appointments – stopping them at about six months – as they seemed to help our baby and were a great source of comfort to me since the CO was very optimistic that we could make it somehow (even though to this day I am not sure why they thought so) . La Leche league meetings would be equally useful but I was ‘lucky’ to have a friend who was having a similar experience with a tongue-tied baby just 7 weeks younger than mine. 

I am writing this as I would have appreciated more practical guidance and support (how to do it, the knowledge that it could be done) than I received. And I am sure that there are many more tongue-tied babies and their parents in similar circumstances since I hear about TT all the time now from friends and colleagues when speaking about our difficulties.

Here are some further observations/thoughts:

• I made it very clear to my partner that he needed to support the breastfeeding efforts 100% and that it was the most important thing for me and he did …  it would not have been possible without it
• TT is a curious condition and the support to address it is not readily available despite the NHS’s recommendation to breastfeed 
• Hospitals don’t necessarily provide adequate breastfeeding support 
• Even people who we paid to help us did let us down even if they did not mean to
• I am eternally grateful to a few who helped us and our baby through this
• Pumping is an art in itself and medical grade breast pumps ensure supply can be established
• If you can, don’t give up on breastfeeding as it is very special