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

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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In those weeks leading up to the birth of BUB.3, I felt my existence had been reduced to a bottle episode. A reduced cast, a solitary set and tension turned up to ten. And endless cups of tea.

20140210-231046.jpgJust a few weeks ago we were in a pre-BUB.3 decorating frenzy, complete with new boiler, new radiators, new plug sockets. It wasn’t a house of horrors but we were camped out, during the day, in one room with boxes piled high at one side.

Both BUBs had a coughing lurgy which had kept them off school for almost a week each. At the end of week one, during a laundry-related rage, I pulled a muscle in my groin that caused great discomfort and week two saw me crippled with unearthly late-pregnancy fatigue.

We were going out of our minds.

I had just watched The Fly episode of Breaking Bad, which the show’s creator Vince Gilligan referred to as a ‘bottle episode’. A bottle episode is the name given to an episode of a TV series involving minimal characters and locations to reduce budget and often increase suspense.

The Fly’s action predominately happens in the laboratory where Walter and Jesse cook their crystal blue meth. Gilligan notes that the limited setting and cast allowed for a slower pace and deeper exploration of character traits and motives. He says:

“Even if financial realities didn’t enter into it, I feel as a showrunner that there should be a certain shape and pace to each season, and the really high highs that you try to get to at the end of a season — the big dramatic moments of action and violence, the big operatic moments you’re striving for — I don’t think would land as hard if you didn’t have the moments of quiet that came before them. The quiet episodes make the tenser, more dramatic episodes pop even more than they usually would just by their contrast.”

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In those weeks leading up to the birth of BUB.3, I felt my existence had been reduced to a bottle episode. A reduced cast, a solitary set and tension turned up to ten. And endless cups of tea. I guessed that our operatic moment would come when BUB.3 arrived and this waiting game was over.

I guessed right. She arrived four weeks ago and she is wonderful. It was tense, it was dramatic and the angels did sing when she popped into our world.

But already we have had our fair share of ‘bottle episodes’ since her arrival. Waiting for the rain to stop, waiting for the floods to subside, waiting for my c-section wound to heal, waiting for tummy bugs to pass, waiting for the baby to put on weight. Right now it feels like an operatic moment will be just leaving the house and climbing into my car.

We are going out of our minds.

But the angels are still singing quietly in the background, every day. She is here. She is HERE.