This is a heartbreaking read. I can relate to so much of what is in this post because Miss NHM also had a posterior Tongue Tie and it wasn’t identified until she was 9 weeks old.
Reading today’s post has bought bank a lot of painful memories for me of that very difficult time but hopefully this Mum’s experience may help other Mum’s who are going through, or have been through, the same thing. The last sentence on this post is spot on.
Thank you very much to the anonymous reader for sharing her experience. I know it’s not easy writing something like this but hopefully it’s helped as part of the healing process.
If you would like to share your experience of anything to do with being a Mum or parent, please get in touch.
A NHM Reader’s Experience: Tongue Tie
Tongue tie, as a first time mum I had no clue what this was and the problems your little one can face from it. Throughout my pregnancy as like all mummies to be, I just wanted my baby to be healthy and arrive into the world safely.
However Tongue tie was one of the things no one had even thought to make me aware of, considering it is so common with apparently 1 in 8 babies being born with it and how easily it is to fix. Hopefully by sharing our story I hope more mummies are made aware of tongue tie.
On the arrival of my beautiful baby girl, I was put in a side room at the hospital. The midwife initially checked my baby could breastfeed and then I was left to it. We saw a health assistant once more briefly to check that everything was OK, the paediatrician quickly checked her over and we were given the all clear to go home.
On going home we saw the midwife for the follow up visits. On one of these, they weighed my little girl and found she had dropped weight but this was less then 10% so they were not concerned.
However on her five day check, we went to the clinic and on weighing her, it was found her weight had dropped further. As a new mum, five days post giving birth you are very emotional and it is the last thing you want to hear that your baby is dropping weight, rather then gaining.
At the clinic I saw two older midwifes and they asked me to show them how I was feeding her. This was an eeekkkk moment as I’m not a mum that is confident breastfeeding in front of people. However I knew I had to suck this up and get on with it, so I did.
On doing this, I was told immediately the way I was holding her was wrong and to hold her like a rugby ball under my arm. I was then asked questions about my milk supply and they came to the conclusion this was failing and told me to get some formula in!
I held myself together but on leaving the clinic and getting back to the car, the tears just rolled down as it was the worst thing I could have been told, that I was unable to feed my baby well enough and all I felt was that I was a complete failure.
That evening I tried to struggle through but feeling so low and with no real support on breastfeeding, I caved and sent my husband to Tescos at midnight to buy formula. All I could think was I was starving my baby who was crying and getting more frustrated as she was struggling to feed, so I had to get some milk in her someway. However this did not solve our problems and just brought on a whole load of different issues.
We started on formula and within days we had stopped breastfeeding altogether as she just couldn’t latch properly. We thought this was best and her weight started going up. The midwifes were happy and we were subsequently discharged from their care. We thought great our baby is now on the right tracks and all will be fine. How wrong could we have been!
In the subsequent weeks our little girl started to suffer with colic, reflux and projectile vomiting whenever she had a bottle. The colic was the worst as our poor girl was literally in pain and cried continuously for hours on end as she was just full of wind, to the point she would rattle with it.
We spoke to the health visitor who said to see the GP, so we did. I explained all her symptoms and I was just given medication to try to help settle her. At no point did the GP or health visitor check in her mouth to see that she had a good latch but it was a case of being told that babies do suffer from colic, sickness and reflux when being fed formula and that it would pass.
However the symptoms were just getting worse to the point that one day while I was home on my own, I had given her a bottle but she started to choke and turn blue.
This is honestly the most scary situation seeing your baby looking terrified as they cannot breath. I managed to get her to throw up and she started breathing again but was inconsolably crying.
I took her straight to A&E as my instincts knew there was something wrong with her and this was not normal. On arrival, I asked her to be booked in and told the receptionist what the problem was, she looked over the desk and commented, well she looks ok now, she’s breathing! I couldn’t believe this and politely but in a no messing with me tone, said that I still wanted her seen to regardless of the wait.
On seeing the nurse in triage, due to her age we were taken through to see the doctor. I again explained the situation and what had happened but they had no clue why she had choked and put it down to one of those things.
The doctor in A&E referred the details to a paediatrician and we were taken to the day ward for observation. They again checked her over and I explained what had happened. The consultant said it sounded like she had just choked and that this can happen when babies are so little as they don’t have a gag reflex yet. She said if it happens again to put her on her front and pat her back which should clear it.
Each time we saw someone we were asked if this was our first baby and when we said yes, the ‘look’ of oh they are first time parents worrying too much came out. As she didn’t do this again while we were there, we were sent home with the advice we had been given.
Over the months proceeding this, we struggled on and found ways to help stop the choking with reflux wedges and sitting her upright for an hour after a bottle. While we did this the next challenge we had was getting her to drink a bottle. Our poor girl was still suffering and we felt like we just had to struggle on as it would get better in time, as this was what we were being told repeatedly.
On taking her to her monthly weigh in, her weight was really starting to struggle. The health visitor at my local one looked at me and said oh her weight has dropped what are you doing with her, what’s happened to change this?
Again this is not what I wanted to be faced with, a question to make me feel as though I was at fault for my beautiful baby girl not gaining as much weight as she should. I replied to say nothing had changed but I was still having the same issues. A
gain no one thought to check in her mouth and it was put down to a blip and she would pick up again. I swiftly left the clinic, again feeling as though I had failed my baby girl. I hated going to the weigh ins after this, to the point I would work myself up beforehand so I decided to buy my own scales and do her weight checks myself at home.
On approaching four months old, her weight had dropped to between the 9th and 25th centile. She was also getting to the point she would only drink an ounce or two of milk at a time and then she would refuse anymore. I knew this was due to the pain it was causing her so I spoke to my health visitor but she didn’t really help and said to go and see her on the next weigh in.
I thought this is not right and I was so worried as I knew my little girl was suffering, I needed to find out what was causing it so I decided to google her symptoms. Normally I would never do this as it can give you so many horror stories and cause unnecessary worry but I had to see if there was any possibilities of what was wrong with her. On looking at the search it all pointed to tongue tie.
The helpful reference was this chart that listed out the symptoms: 
From looking at this list, my little girl had all the symptoms so I wasted no time and booked her into see the GP. The GP checked her but wasn’t sure so asked the midwife at my practice to have a look. She first of all put a finger in her mouth to see what suction she had and the poor girl didn’t have any. They agreed the best thing to do was to refer her to the paediatrician at the hospital that dealt with this and go from there.
On speaking with his secretary on the Monday morning, she took my details and then asked how my baby was fed, I said by bottle and suddenly the tone of the call changed, where she informed me that the paediatrician only dealt with breastfed babies.
Even with me explaining that there was no possibility she could do this and how her health was suffering, I was told he may see her but it would be at his absolute discretion, plus I would have to wait three weeks for this honour.
On putting the phone down I thought to myself sod that, I’m not being made to feel like a second class citizen for bottle feeding my baby as she couldn’t breastfeed so I looked online for somewhere I could have her seen to privately. This is where I found a website that listed all the tongue tie practitioners in the country,
http://www.tongue-tie.org.uk/find-a-tongue-tie-divider.html
I looked through the list of practitioners in my local area and called Katherine. On speaking to her and trying to discuss the problems we were having, I just broke down on her and cried.
Katherine was great, she said she could certainly help and gave me an appointment for the following day at her clinic. On going to the appointment, after explaining the symptoms and looking at her weight chart, she looked in her mouth and confirmed she had a posterior tongue tie which was restricting her tongue by over 50%.
Katherine explained that posterior tongue tie is not picked up so easily as it is not visible but it was very easily treated. Katherine told me what she would do to release the tongue tie which involved one cut to the piece of skin with surgical scissors and that it would take less then a minute.
She asked me to leave the room while she did it and by the time I got to the waiting room and sat down, it was all over. One little snip with the scissors by a trained health professional was all that was needed. This cost £95 privately and I can’t tell you the relief that I felt knowing I wasn’t an over bearing first time mum and that my instincts were right. More importantly, my beautiful little girl would hopefully now start to overcome this and be out of pain.
Picture of her posterior tongue tie
Picture after the procedure
I will say this made a difference straight away. The colic and wind settled down as she was not sucking in air. The reflux also calmed down and choking stopped over the proceeding days.
However she had learnt to adapt to having a restricted tongue for the first four months of her life so she had to relearn how to use her mouth and the muscles with her tongue now freed.
This took several months to reeducate her but she is now a completely changed baby. She’s happy, no longer in pain and her weight is back up, which makes me one happy mum.
Looking back, I have such a mixture of emotions about what we went through as a family. From anger to pure sadness that my little girl was left to struggle and be in pain for the first four months of her life.
I also feel so let down by all the health professionals that saw her as no one picked this up sooner. Such a simple thing to fix but the problems and pain it caused her unnecessarily, when she could have been thriving and happy.
Ultimately I have learnt from this, that you should always trust your instincts as a mum, you know your baby best and don’t think you are worrying unnecessarily.
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