“Getting a posterior tongue tie diagnosis changed everything for us”

As the title alludes our breastfeeding journey had issues and they stemmed from an undiagnosed posterior tongue tie.  I don’t often like telling people about my breastfeeding journey, especially prospective mothers as I don’t want to put them off.  I fall into the stereotypical bracket of breastfeeding is hard, painful and at times miserable.  But that isn’t how this story ends; it was just a little bit at the beginning. 

After being born, George latched on straight-away

On the 2nd February at 07:39am I gave birth to the most beautiful little boy who we named George. When we had that initial skin-to-skin in the golden hour he latched on and fed immediately and I knew that our breastfeeding dream was going to be a reality.  I just didn’t realise that the reality would be such a struggle.

We were discharged home two hours later and it was when I got home I realised I had no idea what I was doing and this was when I started to notice issues.  George didn’t seem to want to open his mouth very wide and he seemed to feed for a very long time.  I thought this was maybe normal. He had a small mouth and little babies feed a lot and for long periods, right?

George didn’t seem to want to open his mouth very wide

My nipples started to get really painful and damaged

I stayed under the care of the midwifery team who visited regularly in those first two weeks.  I expressed that I was having pain and that my nipples were getting damaged.  My latch was checked on several occasions and I was told that it can be tender to begin with and given self-help ideas for the nipple pain.  But I was convinced there was more to it.  I was getting to the stage where I would just sit and sob my heart out when latching George as the pain was so excruciating. 

I spoke to friends who had breastfed and they suggested nipple shields.  I was down for anything so I gave them a go. They helped a little with the pain but made his latch much worse and made latching such a stressful task.  I was at a loss.  In the first couple of weeks of George’s life I ended up with broken sore nipples, blocked ducts and finally, mastitis which made me feel so unwell I really struggled to look after George. It was then I knew something had to give. 

My mental health took a hit during this time

My mental health was being affected and friends were telling me that a fed baby is best and to not put so much pressure on myself. But I was absolutely determined to make it work and nothing was going to get in my way. 

The first thing I did was find a local international board certified lactation consultant whilst waiting on my HV IFC to make contact.  She worked for a charity and we had an hour-long zoom call where she watched me feed and offered support and tactics to help improve our latch.  I wasn’t going to give up without a fight. 

My mental health was being affected and friends were telling me that a fed baby is best and to not put so much pressure on myself.

I did my own research to try and figure out the problem

I started googling and researching everything breastfeeding.  I utilised a Facebook support group (Breastfeeding Guidance and Support UK) and read all the KellyMom, La Leche and Breastfeeding Network literature.  I suspected that my little boy had a posterior tongue tie. 

When he latched he would slip off at times, make slurping/clicking noises, and nipple feed.  He had excessive wind, excessive reflux and would feed for long periods of time quite frequently.  I had misshapen discoloured nipples after feeds. During feeds, it felt painful, sometimes like a scratchy feeling. He had colic and often hiccupped.  He would dribble milk when feeding and sometimes he would cough/gag on my milk flow. When he cried his tongue formed a cup shape, which I described to the Infant Feeding Co-ordinator as “like Free Willy’s tongue”. To my dismay, she hadn’t seen Free Willy. 

When he cried his tongue formed a cup shape, which I described to the Infant Feeding Co-ordinator as “like Free Willy’s tongue”. To my dismay, she hadn’t seen Free Willy. 

I was told tongue ties were becoming trendy

I even mentioned to one of the community midwives that I suspected he had a posterior tongue tie and asked for her opinion.  Her response was “I cannot say if he does as I am not trained however be careful, tongue ties are becoming trendy and some private practitioners just say they do so they can get the money”.  I was quite taken aback by this, in what world would a mother find a frenectomy (the cutting of the frenulum, the part of the tongue that is essentially “tied”) trendy or nice.  I had witnessed a frenectomy when I was nursing in Africa, and the thought of putting my little boy through it horrified me. 

The midwives referred me to the infant feeding coordinator (IFC) with my local Health Visiting (HV) team and got the labour ward IFC to ring me too.  Both were absolutely lovely and I felt supported. However, our experience was in the middle of lockdown so help was limited to phone calls and zoom.  Also, the HV IFC was stretched so thin that it took her a little while to get in touch.  I fortunately had a lovely HV too who came out weekly and then fortnightly to check in on us and weigh George.  I was very fortunate with the support I was offered, even if the knowledge base of some of the practitioners was a little lacking.  George was gaining weight fine and hitting his milestones early so no one was concerned about his development.  The main issues were all mine…cue more mum guilt!    

My partner struggled seeing me in pain but I persevered

Whilst I was searching for answers knowing that pain means there is something wrong, something that could potentially be fixed, my partner struggled at times.  When I was stuck feeding for hours, crying through the pain he would often be my rock, cooking, cleaning and sometimes even feeding me.  He would encourage me to give it another feed when I was getting aversions due to the pain. But one night it almost got too much for him and he said he was going to go out and buy some formula as he couldn’t see me like that anymore.  I pushed for a tongue-tie referral and told him that I wouldn’t give up and switch to formula until I knew that this wasn’t what was causing our problems.  I said I couldn’t forgive myself if I gave up and it turned out that what was causing our problems could be rectified.  So reluctantly he let me battle on. 

Anyone who knows me will know that when I have my heart set on something I am a stubborn and I will achieve it.  Breastfeeding had so many benefits for both George and I, not to mention the cost and environmental benefits too.  Don’t they say nothing worthwhile was ever easy!  Well, that’s what I kept telling myself anyways.

Being told he didn’t have a tongue-tie was bitter sweet

When I finally received my appointment with my local NHS trust I was terrified to attend as I was sure he was going to have a revision.  I attended the appointment that day fearful and spoke to the ENT consultant who didn’t take a lot of history from me and popped a finger in George’s mouth to show me that there was no visible tongue tie. He then sent us away saying he doesn’t have a tongue tie which was a bitter-sweet feeling.  I was relieved he didn’t have to be cut but also devastated as I thought this was going to end all our problems. 

The HV IFC visited me again and referred George to physio thinking that his birth could be causing stiffness which could have affected his latch but when physio found no anatomical issues I felt at a loss.  In my heart of hearts, I was still sure he had a posterior tongue tie and on reflection I was convinced that the consultant had only looked for an anterior tie.  So I made the decision to find a private tongue-tie practitioner. 

In my heart of hearts, I was still sure he had a posterior tongue tie and on reflection I was convinced that the consultant had only looked for an anterior tie.

I kept second-guessing myself but I knew he had a posterior tongue-tie

The first practitioner I found couldn’t fit us in for a little while so she suggested Milk and Mums.  I was so hesitant about booking an appointment but I thought worst case scenario I get some feeding support and a day trip to Newcastle.  My appointment consisted of an observed feed where my latch was noted as perfect.  This made me feel so much better about myself as I can be hard on myself and was blaming myself for not getting it right even though I had watched every youtube video possible, tried all different positions and kept unlatching and relatching to get a perfect position. 

George was found to have a posterior tie scoring 4/8.  I reluctantly opted for it to be cut, even after all our problems I was terrified to put him through the procedure.  He was 10 weeks old by this point and very alert.  I knew that it wouldn’t hurt too much as there aren’t many nerves in that area but I still struggled and oh did he cry and it bled too, not abnormally but enough to make me feel even more guilty. 

His latch improved ten-fold, I was amazed!

All the time I was second-guessing myself, what happens if this doesn’t help? You are putting him through this and it may make things worse.  My anxiety was through the roof.  But I am glad to end on this positive note.  His latch improved tenfold! It took him a little while to learn how to properly utilise the extra range of movement his tongue had and for a while he would just be moving it about in his mouth, amazing himself with what it could do. 

We just hit our 6-month mark and it’s safe to say there’s no stopping us now. Well, we do have teeth to contend with soon but we will cross that bridge when we get to it.  For now, we are happy, healthy, and still exclusively breastfed!

We just hit our 6-month mark and there’s no stopping us now

My advice to any mum out there struggling like I did is to ask for a second opinion.  It does no harm seeking out that second opinion and it might just be the difference between continuing breastfeeding or giving up before you want to.  Since my experience, I have reached out to my local maternity voices and I am hoping to work with them to help with plans for a specialist tongue-tie service in my area. 

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