Thread by @Milk_Matters

A summary - my experience of the last 10 years of tongue tie as an IBCLC in PP in the UK.
When I started working in bf support, most people with complex feeding problems had no idea what tt was. I had no training in identifying ties as a bf counsellor (as I was then).

Using all the skills in my tool bag, there were still cases that we couldn’t improve or resolve. I scoured journals, articles and engaged in discussion with others to try to help these cases - and discovered tt. One case in particular was the turning point.

There was a very obvious, tight frenulum but it wasn’t right on the. Nothing we did resulted in a comfortable attachment or weight gain and so we went to see the local (amazing, progressive) NHS IBCLC who agreed the problems were being caused by the tie. The ENT refused to treat.

He said as it wasn’t on the tip, he didn’t believe it could cause problems. We tried numerous different ENTs at all surrounding health authorities to get a release, with no success. Quite by chance I was introduced to a private tongue tie provider based in London (RN, IBCLC).

They were visiting a nearby area the following weekend and agreed to see the family in question. Following the frenulotomy things improved rapidly and when similar cases arose over the coming months (with ENT refusal), again the provider would come and release the tongue.

I still had cases where things didn’t fully improve or resolve after they had seen an ENT, which would result in further treatment being needed. During this period I completed training as an IBCLC and then was trained by the provider to identify ties.

Due to demand from parents and no doubt complaints from disgruntled families (who felt they’d been left with no option but to seek private treatment) - many areas rapidly launched “tongue tie services”. What has followed has been problematic

And I’ve often mused with my colleague that we’ve just swapped one issue for others. The constant funding cuts to services, and most recently down-grading the pay band of infant feeding leads, means much of the skilled bf help has gone from many areas.

Those that are left may be stretched to capacity and propped up by those with minimal training and third sector orgs. Some areas have trained support workers to identify ties, some treatments are performed by ENTs, some by midwives trained by them.

Problem 1) Families may not see an IBCLC or the infant feeding team, instead the pathway is straight from GP or health visitor to the ENT. In often a very brief appointment (after all they’re not trained in infant feeding), they snip the frenulum and off they go.

If things don’t improve parents can be left with nowhere to turn.There may be no checks that the treatment was successful, that there has been no reattachment (in fact some are told it can’t reattach) and worst case no further feeding support.

2) Quality of treatment. It can be easy to assume all practitioners perform frenulotomies in the same way, but as someone who has observed thousands over the last 10 years, this is simply not true. Some release a bit of the frenulum, some a bit more, some all.

When a frenulum is only partially released, we have two edges of a healing wound sitting together, still unable to move fully apart - reattachment to some degree is almost inevitable (in my experience).

3) The trend is to just go back in and do it again. In some areas they do check post-procedure and if they find reattachment, they quickly release the tongue again - sometimes as soon as a week or two later. If it doesn’t work they then do it again - 3 times max then game over

We are seeing 5/6 week old babies who have had 3 procedures yet exactly the same problems they started with. They may never have had a complete treatment or any qualified breastfeeding support. Similarly ENT is left with the impression it doesn’t help.

4) Over-diagnosis. If we don’t have the skilled feeding help, it can be easy to assume every problem not easily resolved with the basic “flyer training” must be a tie, or a dairy allergy, or reflux, or all three if mum is really lucky...

5) Under- diagnosis. We’re seeing significant ties & baby has never seen anyone feeding related. They may have presented with “reflux”, gone from GP or HV to paeds. A few weeks ago I met a bf mum who had cut 14 allergens from her diet, had reflux meds & baby was still symptomatic

The tightly tethered tongue had never even been considered a contender. Some areas have HCP checking for ties who no training. If the area has no service, a partial service or a consultant that won’t revise those not on the tip - then there may not be anyone trained

If it is noted, HCP may fail to highlight the problem or dismiss as “mild”. As they have no adequate referral pathway it’s a pointless exercise - and they don’t have a spare 20 minutes to explain that to a frustrated, anxious parent...

7) we are seeing more babies than ever in clinic with faltering growth, at times the severity of which we’ve never seen before in practice (and have caused me many sleepless nights). Mums may be told to keep doing what they’re doing until they get a frenulotomy appointment

If this takes 5/6 weeks, this can mean we’ve already got centile sliding. If the treatment isn’t complete (but is assumed so) they can then spend a further 3/4 weeks waiting for baby to improve - only to find themselves at 8 weeks with a baby barely back at birthweight.

These infants can rarely sustain themselves immediately, even with the best treatment in the world - mums supply may have crashed and supplementary milk is most often required to provoke growth, which we find links with increased risk of bf cessation.

Many areas won’t treat bottle-fed infants at all, refusing to acknowledge that a baby using an item designed to mimic the breast, could have the same problems as one feeding from the breast. I’m told there simply isn’t the budget for all -

I’m told there simply isn’t the budget for all - yet we seem to find it from somewhere for reflux meds and hypoallergenic milks (which have increased 700% and now cost NHS over £60 million PA).

Just this week a paed consultant told me tt was over diagnosed and yet that alone couldn’t be the cause of significant, prolonged faltering growth. Our coming case studies demonstrate otherwise. So we’ll keep doing what we do the best we can, and we’ll keep listening to parents.