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WHY ARE WE TONGUE-TIED ABOUT TONGUE TIE?

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Anniki Sommerville reports on tongue-tie in newborns in the UK

Catherine first noticed that something was wrong when her newborn son, Arthur, struggled to latch on each time she tried to breastfeed.

‘I thought it was me - that I was doing something wrong. I so wanted it to go well and I kept trying but it was hopeless. I ended up in floods of tears,’ she says.

After a few days, Catherine took Arthur to the local weigh-in clinic and asked if there was any reason why he wasn’t managing to latch. She was sent away with advice to ‘keep persevering’ and was offered tips on how to express milk ‘just in case things don’t improve’.

‘At this point I felt like giving up,’ Catherine continues, ‘Arthur was wailing all day and night and I felt utterly useless. It was only after I spoke to a friend who said it might be tongue-tie that I made an appointment with a different health visitor and it was officially diagnosed. I realised it wasn’t all my fault after all.’

Unfortunately, Catherine’s experience isn’t unique. Tongue-tie affects roughly 4-11% babies in the UK. Despite the statistics, it remains pretty much under the radar in terms of infant conditions you’re primed to look out for in those fractious, exhausting, early days. Tongue- tie basically means that the strip of skin connecting the baby’s tongue to the floor of their mouth is shorter than usual. For some children, the condition is relatively mild and won’t impact on their ability to breastfeed but for others it clearly causes major problems and can be massively stressful for parents and child alike.

The ‘under the radar’ nature of tongue-tie also means that health care professionals sometimes fail to spot it right away, particularly the harder-to-diagnose posterior tongue-ties. It isn’t part and parcel of the standard check-list for midwives and health visitors when they do their hospital and follow-up home visits.

Sarah Oakley, an independent nurse, lactation consultant and chair of the Association of Tongue-tie Practioners, says that tongue-tie isn’t a condition that the health community are trained to spot off the bat. ‘In my experience, parents are regularly let down and many tongue-ties are spotted by breastfeeding counsellors from the voluntary sector or lactation consultants from the volunteer or private sectors, not by healthcare professionals… or parents have to work out what the issue is for themselves,’ she says.

The irony is that, once diagnosed correctly, it’s relatively easy to treat and only requires a quick (roughly 10 second) procedure (they snip the piece of skin). However it’s clear that cases need to be spotted more quickly than they are currently and then treated right away.  

Andy Johnson- Creek experienced this firsthand when his son, Felix, was born.

‘In our case we were told he had tongue-tie immediately. It was THAT obvious but despite this we were booked for an appointment in 8 and a half weeks’ time.  And this was traumatic for all of us. He couldn’t feed properly as he couldn’t open his mouth wide or use his tongue. Instead of the nipple being at the back of his throat, it was right at the front. And as he couldn’t use his tongue, his only technique was to bite. A lot,’ he explains.

Andy had to watch his wife, Claire, struggle through ‘a bloody and seriously painful routine,’ and felt helpless and frustrated. Because of this experience he has created a petition with two key objectives:

‘Essentially I was annoyed that we were given an appointment so late… it wasn’t right or fair in my opinion. And secondly, the procedure itself is so easy. So I wanted it to be standard practice that babies with this condition are treated at birth.’

The experience of feeding a baby with tongue-tie can be absolutely agonising – bleeding nipples, scabs, mastitis and a baby who is taking in too much air and not enough nutrition. It’s a perfect storm.

‘I felt like I was a complete flop,’ says Catherine. ‘Arthur was only a week old. I kept blaming myself and my lack of technique. Breastfeeding is hard enough without setting yourself up for failure before you start.’

Luckily, in Catherine’s case, Arthur’s tongue-tie was treated relatively quickly but she ended up abandoning breastfeeding earlier than planned because she felt stressed and traumatised by those early few days.

And that’s another difficult issue when it comes to tongue-tie. Women are encouraged to breastfeed (which is great). Sometimes however, this encouragement (from multiple sources: family, healthcare professionals, media, parenting forums) can feel like a lot of pressure. Many find it hard - like it’s something that should come naturally but doesn’t always. Tongue-tie can result in more women throwing in the towel earlier and, as a result, feeling like ‘flops’ which can be a contributing factor to postnatal depression.

Sarah McMullen, Head of Knowledge at the NCT agrees that those early days can be tough

‘More generally, we know that many mums don’t get the support they need in the crucial early days and weeks with a new baby. We know that many mothers who decide to breastfeed find it challenging at first and really value specialist emotional and practical support to help them feed their babies,’ she says.

So in the end there needs to be more awareness of the condition, more treatment available early on and quicker, more accurate diagnosis.

‘I look back on those days and they were a complete nightmare,’ Catherine said, ‘I felt very dark like I couldn’t find a solution. I just wish I’d known more about it before Arthur was born.’

 

Below are some useful resources if you suspect your baby might have tongue-tie:

The Association of Tongue-tie Practitioners has info on tongue-tie and a directory of NHS  and Private Specialist services

Andy’s blog where you can sign his petition and find out more about his experience of tongue-tie

The NHS website outlines symptoms of tongue-tie and steps to take next

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