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All content of this blog is my own opinion only. It does not represent the views of any organisation or association I may work for, or be associated with. Nothing within this blog should be considered as medical advice and you should always consult your Doctor.

Should all newborns be checked for tongue tie & treated ASAP?

Updated: 21.1.17
Recently there has been lots of talk about tongue and lip ties - I've been known to blog about them myself a time or three.  But recently tongue tie talk has taken a turn that has left me feeling a little uncomfortable - a call for every baby to be checked at birth for tongue tie, and divided if identified.

Logically this appears to make sense - snip them all and things will be well with the world, but I fear in practice the reality is not so.  For me there are really important issues that we could focus on first, should we want to promote a change in the current standard of care offered.  This means starting at the beginning, not halfway up the ladder.

First, many many mums with nipple pain/cracking/bleeding/feeding problems are not even getting this flagged as a problem - no really.

They are told positioning and attachment look great, perhaps their nipples are just more sensitive, their hair is too fair, baby has a "hoover suck"or it too big/small/hungry/lazy, it takes time for them to learn how to feed well.  After all, not all women can breastfeed and don't feel bad if you're one of those that can't.  The passive support I wrote about 5 years ago is still alive and well.  In some areas, breastfeeding support still means grabbing mum's boob, baby's head and plugging the two together...

Secondly. the reality of our current care system means that many midwives are already so stretched that there are ongoing campaigns and petitions about the continuity of care women receive, quality of antenatal information, how many midwives are looking after each labouring mum.  Midwives themselves talk about how little time they have to spend with each new mum, 6 hours in hospital pre discharge for some straight forward births and community visits are shorter.

Just this week the news headlines just this week read:
"NHS midwife shortage leaves women in labour feeling ‘LIKE CATTLE’, new report claims A CHRONIC shortage of midwifes in British hospitals leaves women feeling ‘like cattle’ or as though they are ‘on a conveyor belt’ during childbirth, a new report warns."
On top we now want them to be trained, and to implement effectively, checking every new baby for tongue tie?

OK.

Let's pretend that the government announce they've found a secret pot of cash, and run with it.

How will they check?


A sweep underneath the tongue?  Elevating it to look?  Checking function and running a Hazelbaker assessment or other similar tool?  Sitting down and observing a feed and using the above to create a big picture?

Are we checking babies solely for ties that sits right on the tip, or a restriction anywhere down the tongue?

Using method one, the sweep - we're going to potentially identify those ties on the tip, and easily palpable at the front or middle of the tongue.  Those near the tip are often already diagnosed in many areas - a midwife notices the baby crying, or during the NIPE and a good number of parents are indeed told at birth or very soon after.

Great they should have no problems then?

A diagnosis is great - but it doesn't help feed said tongue tied baby, nor does it resolve the tie.
  • Many people have a frenulum(s) that does not impede tongue function - a tongue is only "tied" if that frenulum is too short and tight to allow proper function.  Simply seeing a piece of skin between the tongue and the floor of the mouth, or the lip and the gum means nothing.
  • Parents are often told there's a tie, sometimes that they will be referred for treatment in the community and off they go.  Night two or three, baby with a tie in a shallow latch won't settle, nipples can be painful and because they weren't given any support in feeding a tied baby - a bottle of formula is introduced.  Even if parents plan to get back to breastfeeding, or get through the first few days with relatively few problems - they could then face an 8 week wait in their area for treatment.
  • Once in the community, parents may be told unless there are weight concerns or nipple trauma, the tie isn't causing problems and so won't be treated.  If mum has switched to bottle feeding they won't even assess the tie in some areas, stating it doesn't cause problems with feeding.
  • I see parents who have the tongue tie diagnosis clearly stated in their notes and yet it has been dismissed as not causing the problem.  
  • I see parents who have been told their baby is tied, but there's nothing in their notes - meaning nobody else is aware.
  • Associated symptoms like colic, wind and reflux aren't recognised by many NHS areas as linked to the tie.  Despite the fact NICE guidance recommends feeding is assessed, we know in practice this doesn't happen.  Instead guidance such as infacol, gripe water and reflux medications are widely recommended to parents.
  • It's very difficult for midwives to diagnose, and then have a substandard referral pathway. Imagine the scenario - you see a newborn with a tie, struggling to latch.  You explain to parents their baby has a tongue tie, something they might never have heard of.  This needs explaining fully to parents, who understandably may be anxious or concerned about what is wrong. We should give all the information for an informed decision - except there's only 3 of you covering 9 beds, you haven't had chance to even get for a pee in the last 4 hours and you're already working half an hour beyond your shift with no breaks - so you probably skim through key info as quickly as possible.  You then have to follow that up with the above information regarding an 8 week wait, and I'm sure you can imagine the response from parents?  
"So my baby has a tongue tie that is causing her to struggle to feed, but you can treat this?"
"That's right, it's a very simple procedure in newborns."
"OK, so when will that happen."
"The current wait is roughly 6 weeks...."
"So how do I feed my baby until then?", "Why is the waiting time so long?", "So he can't breastfeed well until this happens?" 
A diagnosis means nothing if effective and informed care doesn't also happen alongside being told what is wrong. 

Now let's also consider that by using criteria such as breastfeeding, slow gain, nipple trauma, ties only at the front - the pool of babies diagnosed with a tie, but eligible for treatment is already significantly reduced (thus saving money).  I'm not suggesting for a second this is how it should be, but in a system that has to allocate funding on a priority basis, it's how it is.

Even with this "filtering", demand is such that even those eligible often aren't able to access treatment in an acceptable time frame.

Treating all the ties already diagnosed would create a huge increase in babies waiting for treatment.

We then diagnose even more by checking all babies (including those that weren't causing any problems) and we're going to refer them into the system too.  This would create a further dramatic increase in service demands, that the system has absolutely no hope of meeting in the current climate.

Even if we say we're not going to treat those not causing a problem, it still means said busy hospital midwife needs to sit and explain fully what they've found, why it doesn't need treating at the moment, what the implications may or may not be - and what will happen moving forward. This then needs to be accurately conveyed to the community team taking over their care, so it's clear from their notes that there is a tie, in case potentially associated problems do arise.

Many, many, many parents who do get early diagnosis of a tie - are reassured it's mild, slight, insignificant, despite the fact that their symptoms are not.  Yet severity seems to be gauged only on how close to the tip of the tongue it sits, which makes no sense if we consider a tight short tie that is hard to see near the back, can be more restrictive and cause more problems than a long stretchy one at the front...

If parents have been told it's "mild" and not going to cause a problem - they may never make the link between that and their 3 month old baby's reflux!  It happens often that after a long discussion I ask if anyone has checked their baby for a tie, oh yes I'm told, they said that early on but that it wasn't severe enough to need treating....

Then we may have the problem of getting ties treated that aren't on the tip of the tongue, but can still be easily felt.  Some areas are still calling these a "fad" or "trend" 

One honest midwife once told me:
" I see them on the ward, but our service won't treat them if not on the tip of the tongue and so it becomes a very difficult situation.  I can diagnose it, but where do we go from there?  I have nowhere to refer them for treatment other than privately."
Then we have the question of how do we diagnose ties that aren't easily palpable or visible? 

This is where we'd need someone:  "Checking function and running a Hazelbaker assessment or other similar tool?  Sitting down and observing a feed, and using the above to create a whole picture?

Who will do this?  The midwife?  What training will she receive in this?  Where will the time and hours come from for her to do so?

What's more newborn oral anatomy can change in the early days as they recover from the birth, pregnancy, labour and delivery can all impact - whilst an anterior tie isn't going anywhere, posterior tongue function CAN change with healing, one has to be able to identify whether the birth impact to affect tongue function and try other measures first.  Sometimes babies that are a little bruised from birth feed totally differently 48 hours after birth than they did hours after.

Checking effectively for  tongue tie - involves tongue function as part of a much bigger assessment and skill set.  We need to establish whether baby's suck is organised, what else apart from the frenulum may be impacting? What impact has labour and delivery had? Is baby struggling one side more than the other and if so what is causing this? What does baby do at the breast during the whole feed?  How does this tie in with an oral assessment of baby's sucking skills?  The skill is piecing together all the information, to understand the big picture.

Midwives would also need to be fully educated to provide enough information to facilitate an informed choice.  We're not even there yet with breast v substitutes, let alone how a restricted frenulum can impact on feeding.

If we then consider that even if we only increase rates of diagnosis by 20% (of 50/50 problematic and not if we're checking all), on top of the surge we've already established would hit the system - we're now talking an exponential increase.  What measures will be put in place to fund this?

Wouldn't it make more sense to:
  1. Ensure all parents are given information antenatally and again at birth to empower them to be active participants in their feeding journey.  So they feel confident identifying the early indicators of a problem, where to go, who to see and what they can do.
  2. Ensure those at the first point of contact can recognise a problem; including key indicators of tongue tie that can be apparent without fingers ever going in a mouth.  Appropriate referral pathways need developing alongside so they can refer to someone with relevant expertise in that area?
  3. A peer supporter allocated to every mother, co-ordinated by a breastfeeding counsellor (BFC) to whom the supporter can refer mums.  An IBCLC or equivalent lactation consultant co-ordinates the BFC and so on, to create the breastfeeding support pyramid.
Whilst anyone and everyone has an opinion on breastfeeding, like podiatry, osteopathy or a speech and language therapist - lactation is a specialist field and indeed a pretty sound science.

Why can't parents expect qualified help? 

 As someone a few years ago said (and I'm sorry I can't recall who) You wouldn't expect to go to the hospital with a broken ankle and instead of seeing a qualified doctor, be referred to someone who had broken theirs a few years ago and done a few weeks training.  Feeding is the cornerstone of longterm health! Peer Supporters have a significant and valuable role to play - but this isn't in the role of someone providing all the lactation education and support both pre and postnatally, diagnosing tongue ties because they are significantly cheaper to employ than someone appropriately trained and experienced.

In a city close to me recent economic changes have meant the NHS no longer provides three full time Lactation Consultants, instead it employs one part time with a Peer Support network.  One LC for a whole city with many more unsure where future cuts will leave them.

A mum on Facebook today said:
"We are losing our NHS lactation consultants from 3 counties in South Wales this year and they won't be replaced. Other than Health Visitors, a couple of Breastfeeding Counsellors and the Peer Supporters, that is it for breastfeeding support" 
Without the whole system to support feeding in place, a diagnosis is just words.

Magic Bullet
The trouble with perceiving anything breastfeeding related as a magic bullet to all problems, is that for many it simply doesn't work like that.  Years ago thrush (Candida) was trend, and everyone and anyone with nipple pain (which extended to deep breast pain too) was diagnosed and medicated for thrush.  Even now we see women who don't have any risk factors for thrush, no visual presentation - medicated due to pain with similar presentation..

The fact there can be numerous causes of pain both during and after a feed beyond fungal.

Tongue tie just like thrush treatment for some women is the magic bullet - if that is the only cause of their problems, dividing it often resolves.

We need to assess the quality of the treatment.  

We diagnose the tie, we get a referral, we get a date for treatment - and only half the tie is released.

These mums will often note only some or short-lived improvement post division, and at times things can even get worse as the baby can no longer use the compensatory skill they have been using.

Tongue ties all have the ability to reattach - yet this isn't regularly checked for on the NHS, some surgeons will readdress if it happens and mum goes back, (if she has been told this can happen) others don't acknowledge they can reoccur and there's a good chance mum can come away thinking division didn't work.

Thinking a diagnosis in the current climate is going to make any sort of difference, expecting the funding to be found to run all the essential associated training and support to happen, when my midwife colleague is still using a PC system that's 15 years old and some areas have run out of red books due to budgets - is frankly delusional.

Mums need more than a pair of scissors  - we need to be campaigning for them to have access to qualified, effective, timely, evidence-based, non-judgemental infant feeding support.

In areas that employ effective support systems, some have developed tongue tie clinics as part of their remit.  The procedure isn't undertaken by surgeons and consultants, instead the infant feeding lead who is assessing feeding or a key midwife,  can treat when appropriate.

This means those who have problems are flagged early by the peer supporters or "breast buddies", they're not expected to diagnose, assess or work beyond their remit - instead they work alongside those who can so mums are quickly seen.  More in depth feeding support is given, and if appropriate, treatment can often be arranged much more rapidly.

The problem we have on focusing solely on the frenulum, is that we risk what has happened in one area.  They had very long waiting times to see one consultant at the hospital, mums were complaining and thus a quick fix was needed.  The answer was to train a large number of midwives to treat tongue tie.  Problem one was that the person who did the training, only treats the anterior portion of a tie - so now we have an army of people copying that technique in the community.  Problem two is that there has been no increase of hours for the midwives to provide feeding support alongside the procedure, because as long as we remove the frenulum we're good right?

10 comments:

  1. Thank you Charlotte. People need to know this stuff!
    Your point about lack of bf support is crucial. Whilst it's lovely that so many midwives refer women to me, I can't help feel I shouldn't be doing their job. I believe breastfeeding counsellors are there to complement the skilled help women should be receiving from their community midwives and health visitors. If you de-skill these professionals, the result is people like you and I trying desperately to fill the gap.
    Often-times, those who have only part of the knowledge or skill can only provide 'support' that is worse than no help at all - checking for TT when you've no idea what you're looking at, or have the skill, experience or knowledge to accurately assess the whole feeding picture is, in my experience, like trying to cook a soufflé without the eggs...

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  2. I was told by an old midwife that traditionally they always kept one fingernail long specifically to nick the frenulum after birth if need be. And would routinely check for this at birth too! Whereas my first grandson was born almost completely tongue tied and it took 2 weeks of arguing and me finally tracking down a prvate surgeon to fix the problem. He could not attach at all before this was done...and my poor daughter was bullied by nursing and medical staff who were furious that she refused to bottle feed. When I told them he was tongue tied, I was informed that "this was no longer acknowledged as a problem nowadays" and that the hospital would not cut his frenulum!

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  3. Yes I've heard this too, and if anyone has evidence of this (written or a midwife who did it) I would be interested - only after watching many TT revisions with sharp scissors, I wonder just how sharp the nail would have to be and how much hacking would be required! Plus why would she have used this rather than say a scalpel?

    Checking for tongue ties at the front of the tongue is also v different to checking for tongue tie full stop - a large number of tongue tip ties are now identified in the community.

    AA

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  4. Excellent!! Where can I get more info on healing for a posterior tongue tie?

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  5. The Paediatrician's neonatal check already involves a (clean) finger in the mouth to check for cleft palate. It would be trivially easy to check the tongue at the same time.

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  6. Tongue tie and the need to treat is based on function, not just appearance

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    1. And some tongue ties can't be felt, particularly in newborns...

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  7. Some great points here I have only just found out that both my boys have top lip ties and the youngest also has something wrong with the tounge but she was unable to diagnose what, I think a routine check at birth would have saved me months of stress pain guilt of not being able to feed properly I expressed for 7 months for my first and only 8 weeks with my second if I knew it could of been fixed easily all our problems I'm sure would if been solved. both times I had bad experiences from the midwives in regards to breastfeeding basic made to feel stupid and useless because I couldn't do it right, I also asked twice to see a lactation consultant with my second but was told she was busy and only came on a certain day of the week. So I'm all for checking at birth!

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  8. Some great points here I have only just found out that both my boys have top lip ties and the youngest also has something wrong with the tounge but she was unable to diagnose what, I think a routine check at birth would have saved me months of stress pain guilt of not being able to feed properly I expressed for 7 months for my first and only 8 weeks with my second if I knew it could of been fixed easily all our problems I'm sure would if been solved. both times I had bad experiences from the midwives in regards to breastfeeding basic made to feel stupid and useless because I couldn't do it right, I also asked twice to see a lactation consultant with my second but was told she was busy and only came on a certain day of the week. So I'm all for checking at birth!

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  9. Some great points here I have only just found out that both my boys have top lip ties and the youngest also has something wrong with the tounge but she was unable to diagnose what, I think a routine check at birth would have saved me months of stress pain guilt of not being able to feed properly I expressed for 7 months for my first and only 8 weeks with my second if I knew it could of been fixed easily all our problems I'm sure would if been solved. both times I had bad experiences from the midwives in regards to breastfeeding basic made to feel stupid and useless because I couldn't do it right, I also asked twice to see a lactation consultant with my second but was told she was busy and only came on a certain day of the week. So I'm all for checking at birth!

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