When she was six weeks old, Elsie was diagnosed as having a posterior tongue tie and upper lip tie. I’d suspected as much for a few weeks previously, but was told that there was just one lady in my home town that could assess and diagnose, and the breastfeeding group she runs is both a fair drive away and at an awkward time for school pick ups. Since Elsie was gaining weight ok and I was in no pain, I felt there was no rush to get her seen.
When I finally got to the group, a breastfeeding counsellor spent an hour and a half with me, advising me on optimum positions to feed Elsie, and showing me over and over again how to re-attach her after she had slid from the breast. What an eye opener this was! This was the day that I realised Elsie was not feeding well. I know how silly that sounds. Perhaps her being my 4th and my feeling that I knew what I was doing had blinded me to the issues we were having? Perhaps the fact that I rarely fed her without doing something else at the same time was to blame? Whatever the reason, I truly had not realised how bad things had become.
Our positioning was all wrong. Elsie’s body was at a funny angle and I was holding the back of her head so that she couldn’t stretch back and open her mouth wide enough to attach. Then when she did have her head in the right position, she couldn’t open her mouth due to her upper lip tie. And her tongue tie meant that within seconds she had slipped from the breast. Over and over and over and over this went. Eventually we agreed that she needed to be assessed for the tongue tie.
Elsie’s tongue tie was posterior, meaning it was at the back and difficult to diagnose because you need to feel for it. You can’t see it by looking. The tell tale sign of the tie was the fact that when she cried, her tongue appeared to ‘cup’ in her mouth. She was diagnosed within seconds and we were referred to Oldham hospital to have it revised.
The next day the lactation specialist called me and talked me through some of the issues we were having- the group had been so busy and by the time she’d got around to Elsie and I we needed to leave. We talked about Elsie’s IUGR and the fact that feeding needed to be spot on for optimum weight gain. Speaking to others on Twitter (thank goodness for @PumpingMummy and @ESasaruNHS ) I knew that there are other reasons why tongue tie division was important too. That, alongside the fact that I now knew how badly she was feeding, was enough to make the decision to go ahead with the referral.
In the weeks that followed, as we waited and waited for our appointment, I went over and over our decision in my head. I wasn’t sure it was the right thing to do. It seemed extreme for a baby that wasn’t really suffering with her tongue tie. And then things began to get worse.
Sleeping became a nightmare. It just didn’t happen. Some nights I spent four hours trying to settle her.
The grunting continued, escalating in the small hours.
Reflux symptoms began to appear.
Feeds became a torturous experience of frustration at being unable to latch, frustration at being unable to stay attached to the breast, and frustration at being unable to take a full feed. Most nights were one continuous feed, ending only when I gave in to the frustration and stopped the feed.
Elsie’s congestion became so bad through the night that her breathing was affected more and more, and became worse the more frustrated and angry she got.
Then her weight gain began to dip a little. She started to fall off her curve. Not a big deal, you might think- but huge for an IUGR baby just hanging on to the 2nd centile. She is now below that precious line.
So this week we arrived for our appointment, and were shown into the consulting office. We were given lots of information on tongue tie and some facts about the procedure and after care. There are no blood vessels or nerve endings in the tie itself, which is why babies do not feel pain when they’re snipped. It’s a quick procedure and of 20,000 babies across the UK that had it done last year, only one became infected.
We were then shown to another room and told that Elsie would be next door with the doctor. The doctor would quickly check that the tongue tie was indeed present, and if so she would snip it, hold a piece of gauze under her tongue and bring her straight next door to me for a feed. If there was no tongue tie, she would bring me in to show me. As the doctor and nurse left the room, they closed the door and I turned to my sister.
“Thank goodness I don’t have to see it being done!” I exclaimed.
Then the door opened and there was Elsie. A piece of gauze under her tongue, screaming wildly. I was assured that she was screaming due to having the gauze under her tongue, and not because she was in pain. She was given to me, positioned correctly and after a few seconds of fussing, she latched on and fed.
And that, was that.
Our breastfeeding journey can now finally begin. She is taking full feeds and she is looking and sounding satisfied afterwards. She and I still need to re-learn how to work together, and how to drop the bad habits we developed but one thing remains clear. What a fighter my little IUGR baby is! Despite her tongue being unable to move correctly for feeding, she still took what we could and kept herself nourished. Another reason why she is so amazing!
We’ve been told that lots of skin to skin will help us to reconnect once more, and the kids are delighted that we have been ordered to stick our tongues out at Elsie as much as we can. She is already responding my copying- how wonderful it is to see that little tongue poking out at last!
For more information on tongue tie, see here.
So so glad for you and Elsie that you had the support early on to get the tongue tie diagnosed, and snipped early enough for you to get onto more successful breast-feeding.
It’s my opinion that checking for tongue tie should be done before a baby leaves hospital and that more midwives should be trained to recognise and fix it. It can make such a difference and I’m horrified at how much of a difference there is in different places in how it’s recognised and dealt with.
Our experience was non existent until N was older. I didn’t know about tongue tie until I heard friends who were struggling with breastfeeding a couple of months down the line and then were getting it recognised and snipped. For us, N was an unplanned cs, then although he’d latch (supposedly well according to midwives), he wouldn’t suck. We tried different positions and then on day 3 in hospital after hand expressing a bit until then, his blood sugars were checked to be low, and was advised to formula feed until breast feeding kicked in better along with my milk. Noone checked for tongue tie as a possible reason for him not breastfeeding and I wouldn’t have known about it to ask. It wasn’t mentioned in my NCT antenatal classes, or in any books I read or online.
So we just ended up formula feeding because it was working well, and I’d given up trying to breast feed him a week in. He had a bit of silent reflux, and dribbled loads until he was 2.5yr. Then nursery picked it up that he couldn’t lick round his lips, he had a bit of a forked tongue when he stuck it out, and some of his words sounded like one of the girl’s nephews who was tongue tied. Thankfully the doctors were good, referred him to speech therapy to check if it was impacting him and it wasn’t so we didn’t have to go through general anaesthetic to get it snipped. But always worrying and just so annoying that we basically didn’t get the chance to do more breastfeeding which we might have been able to had he been checked while we were in hospital.
I completely agree that they should check as a matter of routine. Elsie and I were discharged from hospital before feeding was established, as the midwife was confident that I knew what I was doing. I’ve never had experience of tongue tie though and Elsie just would not feed. We syringe fed enough to get her through the first week but she lost a lot of weight. Eventually she and I learned ways to compensate and carried on from there with a slow weight gain but a gain none the less. She is 12 weeks now and only just feeding well. All of this could’ve been corrected so early on! Thanks for your comments, I will definitely have a read of your posts x x x x
Whoa, sorry, huge reply! Couple of posts on my blog anyway, if anyone wants more information on toddlers with tongue tie.
Oh bless her.
I know, poor little thing! x x
Susanne, I’m so happy for you and for Elsie. My heart was aching for you reading that post. At least now you can put it al behind you both and move on. When I meet her I’ll be sticking my tongue out at her too! xx
Haha feel free! Can’t wait for you to meet her! x x x
So happy for you
Thank you x x
Oh gosh S, you’ve both been through so so much. And wow, there’s only that one lady in town that can diagnose? That’s crazy isn’t it? Glad it’s all done know and they finally found it. I hope this next stage of the bfeeding journey is a lot lot easier. Xx
Yes, they don’t train people to spot it any more apparently. If it was checked at birth lots more women would breastfeed successfully I’m sure! x x
So glad you have got it cut.
Lucky you didn’t have to be in the room I had to help hold Aria for hers, and then immediately cuddled her and got blood all down my top (not that I cared). My GP is trained in minor surgery and can do it in the surgery so we didn’t have the wait that you did.
Me too. Wish we’d had it diagnosed a long time ago! x x
So glad that you were able to have Elsie’s tongue-tie snipped and that it is making such a big difference. Hope she will start putting on weight and get back on her centile curve too! 🙂
Thanks lovely, I hope so too! x x
Oh, I am so glad that the tongue tie has been corrected – how are you finding feeding now? Wonderful that she can stick her tongue out now!
Oh darling I didn’t realise that you were going through this! I’m so glad that Elsie has been diagnosed and treated and that your breastfeeding journey can finally begin again. I know from personal experience how distressing it is when an IUGR baby isn’t gaining weight. Thinking of you and sending hugs your way xx
I’m so glad it’s all sorted now. I’ve not had any experience of this but it’s reassuring to know that the procedure itself is so simple. I hope it all goes really well for you now.
What a journey you have both been on, so terrible that you had to wait so long for it to be picked up and then rectified. My friend had a similar experience, I never realised just how common a problem it was.
So happy to hear this! Breastfeeding normally will now help her gain weight, and I hope she sleeps better too.
Oh you poor thing (and poor little Elsie too) Fascinating that they don’t feel it being done (and brilliant that people are sensible enough to do it out of the room) Hope your feeding journey becomes so much smoother for you all now x
My bub at 5 months has just been diagnosed with posterior tongue and is booked in to have it snipped in a week. The breastfeeding stories I have heard are very similar to what I experienced in the early days before I switched to giving expressed milk from a bottle, which I am still doing. Breastfeeding was frustrating and painful. Bub would slip off and munch on the nipple, easily tire and become frustrated, choke on the milk and had either poor seal or inability to control the milk which would leak from his mouth and drench both him and myself. I was told it was the result of just poor attachment and was made to feel that the difficulty laid with my ability. The paediatrician was adamant there was not a tongue tie but at no stage put his finger under bub’s tongue. As you can’t see posterior tongue tie I am struggling to accept that it is there and am worried we are snipping a normal structure. We are going ahead with the procedure as we stories like yours have helped me to accept bub has a tongue tie. Thank you for sharing your story.
I felt the same as you, unable to see the tie I wasn’t convinced. But I was reassured that Elsie would feel no pain as there are no nerve endings there, and being told by professionals that the tie was present (and very thick) helped me to realise that it needed doing. The photo on the post of Elsie post snip was literally seconds later. And in the days afterwards her whole posture changed- no longer holding herself so stiffly and smiling SO much. She has a cheeky smile with her tongue sticking out now and the snip really made a difference for feeding. She is now eating solids and doing so well. I’m sure if her tongue tie hadn’t been treated, we would be facing new issues now x x x x
Gosh, from a speech pathologist from the “good ol’ days,” I just don’t understand why the doctors and midwives don’yt just snip those tied frenulums at birth and save these kids years of dysfunctional feeding, speech, and cosmetic issues. It’s NO BIG DEAL when they are babies. When the kid gets to be 7-8 and can’t say his./her R sounds, can’t keep his/her lips closed, and has the gums exposed in smiling, then clipping that piece of skin has become a BIG DEAL. Most therapists would just go along and say, “Don’t clip it, he can talk.” But, can he clear food out of the back of his mouth? Will he ever be really able to kiss? Why do parents make such a big fuss over such little things as a tongue tie? Get it clipped, and let the kid feed and talk like he/she should, and save yourself years of feeding and speech therapy.
Thank you for your comment. I really wish tongue tie was checked as soon as babies are born. My 3 year old has just been referred to speech therapy and we are awaiting assessment for her tongue too now. I never knew anything about it until Elsie came along!
Hi, I notice you had the procedure done at Oldham. Could you please advise how you were diagnosed? My son has many symptoms you describe and I believe has posterior tongue tie. I’m seeing both the gp and hv tomorrow and am wondering if someone will assess this for me? If so, which one would refer us? Many thanks.
I am so sorry for the late reply. Yes we had it done at Oldham, I had to see the lead breastfeeding support worker at Bolton for a referral. I hope you managed to get sorted out ok xx