Tongue-tie: Can anyone give me a straight answer?

Tongue-tie

An unexpected breech caesarean section, BUB.3 first appeared to me as a long, bright pink, crying blur. “She’s got a tongue-tie which they say they can cut” Willy Wonka said, reassuring me she was OK as they checked her over on the table behind me. From something so certain, the first thing I heard about my daughter in fact, the next 11 days didn’t bring quite so much assurance about what I had been told.

She had a tongue-tie. Severe. 100% we were told. During my hospital stay she was checked and we told it was up to us whether we got her snipped or not but that it would only be done if there were feeding problems. We were told by one person at the hospital that it was a 50% tongue-tie. So immediately there were mixed messages. Some hospitals snip before discharge. But here, at the Royal Berkshire Hospital, we were visited by a tongue-tie specialist and sent home. Unlike some mothers who only find out because they have problems breastfeeding, we were in no doubt that BUB.3 was tongue-tied.

What is tongue-tie?

Tongue-tie (ankyloglossia) is when the bit of skin that joins the tongue to the bottom of the mouth is longer than usual, sometimes making it difficult for the tongue to move freely. It’s quite common, with the NHS stating that it affects between 4% and 11% of newborn babies. It can resolve itself, or it can cause problems with speech and tongue movement later on. Tongue-tie is fixed by simply snipping the skin (frenulum) so that the tongue is released. If one early enough, it’s a very quick procedure where a bit of local anaesthetic is rubbed into the mouth and the skin is snipped with a pair of sterilised scissors.

When to snip?

Knowing that BUB.3’s was a severe one, knowing that I had struggled to get my milk going with BUB.2 and BUB.1 previously, that they had both lost weight initially and knowing how very hard I had to work to make breastfeeding a success, I would have preferred to have her snipped as soon as possible so we had every chance of making feeding a success. I know some people baulk at the idea of taking a knife to the tongue of a newborn, but I’m tough and I had read that babies cry momentarily and then move on from it. Some even sleep through the procedure. She was my third child and I knew she’d be OK.

After our initial struggles, I had gone on to feed my first two children for 19 months and 27 months respectively. With BUB.3 I had to forsake my favourite part of childbirth, the pushing, for a last-minute c-section: I wasn’t ready to give up breastfeeding too.

The procedure at my hospital was this: I had to try feeding and if there were difficulties, I had to visit the breastfeeding clinic at the hospital, nine miles from my house, with a two-year-old in tow, and prove that we were having problems feeding. I had to do that three times before the problems would be signed off as due to tongue-tie. This is despite her having a visually obvious tongue-tie which I was not prepared to let her live with knowing that it may, or may not, cause problems later on.

Breastfeeding problems

We WERE having problems feeding. She couldn’t seem to open her mouth properly. So we tried positioning and all that jazz. But all the while, my milk wasn’t flowing because the demand just wasn’t there, and we weren’t getting going with breastfeeding. I was frustrated that I had an extra obstacle to face. Given that I’d had such difficulties before, which I explained to the wonderful breastfeeding clinic nurses, I just wished someone would book me in for a snip as soon as possible. But instead I got mixed messages about the wisdom or necessity of snipping it now. I just wanted it done. I didn’t want to take any risks with her future mobility or speech.

In the end, it took the three visits to the breastfeeding clinic for them to sign her off for a snip. 11 days after she was born. 11 days of struggling with feeding, of going back and forth to the clinic, in and out of the car when even walking hurt due to a very painful c-section wound.

Her tongue-tie wasn’t in question, it wasn’t doubtful. It was 100%. I had to top her up with formula from day one, as I had to have a bladder X-ray after the c-section to ensure no damage had been done during the c-section (the surgeon was worried her scalpel may have slipped in the hurry!), and was banned from breastfeeding for 24 hours.

The day of the snip

But I’m tenacious and once booked in for the snip, I was determined. The snip itself was fine. In the event, I couldn’t look at her as they did it (Willy Wonka was next to her), but I fed her immediately afterwards, as best we could, and she recovered within seconds. From that moment she latched properly, her tongue was free and we took off! I didn’t end up feeding her as long as the others, but I did feed her for six months. I had to stop as my milk supply was lower than the first two and my energy and ability to express milk to keep it up was dwindling under the weight of having a three and five-year-old to look after. But we did it, despite the tongue-tie, and I was thankful we had.

A problem shared

As I thought about what a struggle it had been to get the result I had wanted from the start, I asked friends if anyone else had had a similar tongue-tie experiences. I learnt that the procedure for dealing with tongue-tie varies across the country. I learnt that I could have gone private. I wish I had gone private even sooner than 11 days. But I guess wanted to hear a consistent, facts-based advice from the NHS, which I didn’t get. I also learnt that tongue-tie can affect both breastfeeding and bottle feeding.

I understand that babies need to be monitored to assess whether the snip is the best route for them but in a case where the tongue-tie is deemed to be 100% why did I have to wait 11 days? However, I was lucky someone spotted the tongue-tie at birth, possibly because it was so blindingly obvious.

Amongst a handful of friends (names changed), here are some of their very different experiences

Kate: “My baby kept latching on and then coming off and it became very painful. A midwife noticed a tongue-tie and advised me against snipping. He can’t stick his tongue out very far and mispronounces some sounds.”

Teresa: “I had breastfeeding problems but my baby’s tongue-tie was very slight and the professionals weren’t even sure if he was tongue-tied. Once they were sure, he was seven or eight weeks old, the Royal Berkshire Hospital could not snip that late in the day so we had to travel to Southampton. The doctor who we spoke to gave us some literature and said: ‘Every child has the right to be able to lick an ice-cream!’ Unfortunately, cutting the tongue-tie didn’t solve his feeding problems. I eventually persuaded him to take formula from a bottle when he was about four months old, and his weight shot up from the 0.4th centile to the 25th in the space of eight weeks.”

Zara: “I found out all three of my sons were tongue-tied at birth. Son number one’s feeding problems were solved by a cranial osteopath, my second son was a fantastic feeder but never seemed to be satisfied after a feed, and my third son had a very lazy latch. It was my midwife who said my second child would need surgery. I don’t remember it being any worse than number one of three’s, whose both snapped, but I just accepted this was the route to go and he had the snip at 11 weeks. The after effects of the surgery for the week following were horrendous. Feeding was awful as the tongue healed, I remember the wound looking really sore, like an enormous ulcer….he just didn’t want to feed at all. I don’t really remember being given much advice on how to treat the pain. He was miserable and for that week I regretted every minute of having agreed to the op.”

Elizabeth: I found out my first baby was tongue-tied at about 24 hours: it was severe and there were feeding problems. I desperately wanted to breastfeed and was told that cutting it would help. We got his tongue snipped at about two weeks and went back for two follow up appointments. We had to massage the wound twice a day for two weeks, which was heartbreaking. In the mean time I was putting him on my breast to keep the milk production, expressing to get milk to top up and also topping up with formula. At eight weeks, the poor little mite was still not back up to his birth weight and he was constantly screaming because he was hungry. After a horrible trip to the health visitor where he’d actually lost weight, I got home, gave him a full formula feed and I had a different baby. I came away from the whole experience feeling that for something that seems so common there is a massive lack of advice, support and knowledge. I also feel that the pressure to breastfeed adds massively to the confusion and inconsistent messaging around tongue-tie. I heard in South Africa that tongue-tie is checked and operated on either in the delivery suite or on the delivery ward. I don’t know how true that is, but think my experience would have been massively different if that service was readily available in the UK.”

Susanne: “My son fed straight away and put on weight well but I knew something wasn’t right as he was taking loads of air and his latch didn’t feel right. I breastfed my first son so I knew what it should feel like. A friend who met him at about two weeks suggested he might have tongue-tie, so I took him to breastfeeding clinic at hospital. They were awful. They basically forced him into me so he was all but choking, said he had a “very tiny” tongue-tie and that it was basically my fault for not doing it properly. They refused to cut the tongue-tie and said he was fine because he was putting on weight. I finally called in a private lactation consultant who cut it at about five weeks, which was much later than it should be. She instantly diagnosed a 60 to 70% posterior tongue-tie. She watched me feed him, said “This is NOT your fault” and I burst into tears! She cut it immediately, and the improvement was instant but gradually worsened again. We had it done again as it had grown back a few weeks later but there was less improvement and I wish we hadn’t as he was traumatised by it and so was I. But as he got bigger, his latch improved and we exclusively breastfed until he was about six months and he was a thriving, strapping baby.”

Fiona: “My second child had a tongue-tie. I spent hours in the breastfeeding clinic crying with my nipples bleeding, and mastitis, purely because he couldn’t latch and it was so unbearable I’d never empty. They said they’d book him in for it to be snipped. The appointment never came through and I had to give up breastfeeding.”

Linda: “My first child was diagnosed in hospital by doctors, and during my midwife visit at home she said she wanted to get it snipped. A week later we were at our appointment at the hospital to get it snipped, but when we got into room the doctor took one look at it said and said “It’s not too bad, if he is feeding OK then leave it.” It was just a waste of a morning for me. As a first time Mum I just went along with it but I just wanted everyone to have the same opinion and know what they were talking about. If second child maybe I’d have done a bit more research of my own and not even turned up the appointment.”

What was your tongue-tie experience?

As you can see from just a handful of people close to me, this is a common problem and the approach to it, at a time when new mothers need reassurance and sound advice, is haphazard to say the least.

The problem of tongue-tie is intertwined with the issue of breastfeeding and the associated doubt and guilt about the best way to proceed if your child isn’t gaining weight. The first few days and weeks of a baby’s life is all about getting milk to survive and a tongue-tie can impact that ability. Some babies aren’t affected. But from speaking to people, it’s clear a lot are.

If you have a tongue-tie story to share, please comment, or share this post with others to highlight the need for a better way to deal with something so common but which can be so disruptive to successful breastfeeding in the first few weeks of a baby’s life.

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  20 comments for “Tongue-tie: Can anyone give me a straight answer?

  1. July 6, 2016 at 2:43 pm

    I have never experienced tongue-tie but I think your post is very informative. It’s very sad to read that you were not given the correct information and advice. I will be sharing to hopefully help raise awareness of tongue-tie. #bloggerclubuk

    • July 11, 2016 at 9:17 pm

      Thank you!

  2. July 11, 2016 at 8:16 pm

    I don’t have a story but thank you for sharing and it seems it’s something that affects so many. I understand the NHS needs more resources but sometimes the treatment of mothers defies sensible or logic thought. Both mine were born at the RBH and although happy and healthy it’s clear that the units are stretched. well done for sharing as it’s not an easy story and well done for the breastfeeding xxx #fartglitter

    • July 11, 2016 at 9:08 pm

      Thanks! RBH was great. Busy of course, but I was very impressed overall despite the fact they are so stretched. Thanks for reading! 🙂 xxx

  3. July 11, 2016 at 9:00 pm

    I feel so fortunate that neither of mine ever had to deal with this problem. I can’t imagine how hard it must be having to prove that your baby has feeding problems and then have them go through the procedure. Kudos to you for battling on with breastfeeding. Amazing stuff! #KCACOLS

    • July 11, 2016 at 9:07 pm

      Thanks! It was worth it but I was happy when it was over..mostly happy. Thanks for reading!

  4. July 11, 2016 at 9:33 pm

    Interesting to see what varied experiences everyone had! Mine never had tongue-tie but it is common for people to present to their GP/Health Visitor with it and we often refer on to a specialist to assess and decide with the parents on best management. Glad yours got sorted and that you had success feeding! #BigPinkLink

  5. July 12, 2016 at 12:38 pm

    How awful that it took so long to get it proved! Its hard enough after giving birth let alone having to mess around dealing with all that too xx #KCACOLS

    • July 13, 2016 at 8:18 pm

      I know! In the scheme of things it’s a minor issue and easily resolved but I just wish there was a plainer, more straightforward set of advice for those it happens to! Thanks for reading 🙂

  6. July 13, 2016 at 6:57 pm

    I’ve been lucky and my little girl did not have tongue tie but this is a brilliant and informative article to help those who are going through this. Such a tough start to cope with the breastfeeding, thank you for sharing your story with #dreamteam Hope to see you next week! x

    • July 13, 2016 at 8:14 pm

      Thank you! I hope to link up next week too! xx

  7. July 13, 2016 at 8:14 pm

    I haven’t had any experience of tongue-tie but I found your post really interesting and informative. I didn’t realise how easily is can be resolved and I think I agree with you in that I would want it to be carried out as soon as possible in all cases. I’m so pleased that it solved the issue for you and that your little one handled it so well. Thanks for sharing with #fartglitter x

  8. July 14, 2016 at 11:11 am

    It always feels like everything to do with maternity services is a complete postcode lottery in the UK – one health board will do something, while the one next door won’t. Marianna was checked for tongue tie because she wasn’t taking to a bottle (breastfeeding was right out – she was on NICU and I was doped to the eyeballs, lol), and had to be tube fed for a couple of weeks. My instinct that she was just lazy proved to be right, and she took to it quickly enough once she realised she couldn’t just lie there and get her stomach filled! x #KCACOLS

  9. July 14, 2016 at 8:11 pm

    I’ve never experienced tongue tie and I’m so sorry that you and bub3 had a tough time at the beginning. You really should have been given more support from the hospital. Unfortunately the guidelines are different worldwide. There needs to be a better concensus on this serious topic #KCACOLS

  10. July 14, 2016 at 9:31 pm

    It must be really tough for you having so much conflicting advice. I know in my area, I have heard of someone coming to the home to do it. I hope she is OK now. My eldest sister was tongue-tied and it took ages for it to be picked up back then and it was only when she had speech problems did a health visitor notice. #KCACOLS

  11. July 15, 2016 at 2:25 am

    This was so interesting to read. My 3 month old and I are still struggling a bit with breastfeeding, we have good and bad days but because she’s putting on weight no one has investigated a tongue tie (we live in the USA so everything here is done a little differently). After reading this I’m definitely going to ask about it at our next doctors appointment to rule it out. Thanks for sharing all the stories. #KCACOLS

  12. July 15, 2016 at 3:12 pm

    I don’t have any experience of tongue tie, and only had one friend who experienced it, who didn’t have any problems feeding, but got it done at around the same time you did, just to be on the safe side. From your story, there does seem to be a huge lack of understanding and uniform diagnosis and treatment protocol. I’ve always found it a little annoying that the treatment in different health trusts varies-with healthcare, it seems that a unified approach across the country, with the most up to date evidence based practice, would be the best approach!! From some of the people you have spoken to, the experience has been horrendous, which really shouldn’t be the case. This is a really helpful and informative piece, for anyone wanting to know more, or with little experience of a tongue tie!! Thanks for sharing with #bigpinklink

  13. July 15, 2016 at 8:01 pm

    I have never experienced this myself or know anyone who has. I find it strange though that it is treated differently and there is hesitation on some healthcare providers parts to treat this #kcacols

  14. July 16, 2016 at 9:13 am

    I haven’t experienced this before. It is interesting to read this though. You learn a lot from other people’s stories. This is definitely super useful for other parents that are going through the same experience. Thanks so much for sharing this at #KCACOLS. It is lovely to have you, 🙂 xx

  15. July 16, 2016 at 10:04 am

    Sorry you had such difficulties. I had suspected that policies on tongue tie vary quite widely, as I know people near me had a lot of problems getting agreement for a tongue tie to be snipped, as told that it is now considered better not to do it. On the other hand, my sister elsewhere in the country was allowed one immediately without any questions or dispute for a baby with a very minor tie that was causing no difficulties with feeding at all! #KCACOLS

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