Tongue Tie: the other side of the divide

Recently I read a blog post about one mother’s experience with her baby’s tongue tie. It was a familiar story: the tongue tie was not picked up for several weeks, during which time breastfeeding was painful and the baby fed ineffectively. By the time the tongue tie was divided, the mother’s milk supply was severely compromised because of that ineffective feeding, and shortly afterwards, she took the decision to stop breastfeeding completely. She feels angry and let down by the health professionals who did not diagnose the tongue tie sooner, by the NCT for not telling her about tongue tie in the antenatal breastfeeding session, and by society for insisting that breast is best, and making her feel like a failure.

I have heard this story so many times, and after reading it I spent quite a lot of time reflecting on why I find it so painful to read, and also on just why it is such a common tale.

What is tongue tie?
Definitions of tongue tie vary from source to source, but all seem to agree on the basics:

Tongue-tie is a problem that occurs in babies who have a tight piece of skin between the underside of their tongue and the floor of their mouth. – NHS Choices.

UNICEF adds that this tight piece of skin stops:

the tip of the tongue from protruding beyond the lower gum. It varies in degree, from a mild form in which the tongue is bound only by a thin mucous membrane to a severe form in which the tongue is completely fused to the floor of the mouth.

Note the varying degree. When a tongue is bound by a thin mucuous membrane, this is usually visible even to the inexperienced practitioner, as you can see it at the tip of the tongue, and it often causes the tip of the tongue to be heart-shaped rather than pointed. “Completely fused” would probably also be obvious. However, there are all the degrees in between these two, which are much harder to spot, harder to diagnose, and harder to resolve. Most practitioners agree that an assessment of the function of the tongue is actually far more useful than making a diagnosis on the basis of what you can see in the baby’s mouth. There is a good tool for assessing both; however I feel that this still misses out a hugely important factor: the mother’s experience.

Suspect and Signpost
As a Breastfeeding Counsellor, my remit with regard to tongue tie is to suspect, and to signpost. I’m not clinically trained, nor am I insured to feel about with my fingers under a baby’s tongue. I do have a number of years’ experience in supporting breastfeeding mothers, and it would appear that there is absolutely no situation where it’s completely obvious what to do. In the last few years I have seen a tongue tie so severe that a Lactation Consultant later said that the baby would not have been able to bottle feed, never mind breastfeed; this was not picked up by the hospital midwives or paediatrician. I have seen clumpy little tongues on babies who pile on weight regardless, owing to their mothers’ robust milk supplies. I have seen mouths with every appearance of a a tongue tie, which on referral to the NHS clinic have come back with the diagnosis ruled out. I have witnessed a midwife dismiss tongue tie as “definitely not,” and gone on to support that mother to finally have it divided six weeks later. I have seen babies whose tongues look completely normal, but on listening to the mother’s story I hear familiar warning bells; and having tried everything we can think of to improve positioning, there is no improvement. I can suspect tongue tie all I want, but if the clinicians to whom I signpost parents disagree, then mothers are left with very little they feel able to do.

So if tongue ties are so variable in both appearance and impact on function, what sort of clinical training would grant me the apparently magical ability to diagnose consistently and reliably, and send mothers and babies to get the treatment they need? So while I am, in theory, supportive of NCT’s ongoing campaign for better services for babies with tongue tie, I have some reservations about how this might be done. In fact, as usual, I feel that it would be helpful to campaign for better services to support parents of newborn babies, full stop.

In conversation with one of the lead breastfeeding midwives at a local hospital, she expressed irritation at the number of referrals she gets where tongue tie ends up being ruled out. In accordance with NICE guidelines, she would prefer conservative management of tongue tie, and better help with positioning and attachment for all mothers. It seemed that she felt the people providing breastfeeding support in the community should be doing a better job. Apparently this is a widely-held view among health professionals and parents alike, so here I’d like to point out that most of our work is done on a voluntary basis, nor do we get paid for the time we spend doing training, and in many cases we pay for our own training.

As one of those who works in the community providing breastfeeding support, I do have the advantage of being able to spend time listening to a mother and observing her baby feed. If I suspect a tongue tie then I will always explain this to the mother and inform her of her options. I don’t make the decisions for them, and I do explore positioning and attachment, and other things that might improve breastfeeding for both of them. The options I inform her of will always include a referral to someone who can rule tongue tie in or out, but frankly anyone who is 100% certain that they can rule a tongue tie in or out at a glance needs supervision.

The NHS is not in a position to grant every midwife the specialist skill of identifying tongue ties, and the experience to do so, overnight. The voluntary organisations even less so. This is simply impossible, never mind the cost, the fact that tongue tie division is an invasive procedure, and – I’m afraid – the lack of clinical evidence to support it. Here is the NICE guideline on that:

Current evidence suggests that there are no major safety concerns about division of ankyloglossia (tongue-tie) and limited evidence suggests that this procedure can improve breastfeeding. This evidence is adequate to support the use of the procedure provided that normal arrangements are in place for consent, audit and clinical governance.

Hindsight
Once I fractured my wrist. Initial x-rays showed no fracture, but six weeks later as it had healed, the x-ray clearly showed where the fractured bones were knitting together. Mothers who realise later on that their babies have or had a tongue tie can look back and understand why they had such difficulty breastfeeding, and this can only feel bitterly disappointing, on the basis that if it had been diagnosed and treated, everything would have been fine. In fact not all tongue tie divisions are successful; some regrow and some are just not completely divided. Many babies seem able to breastfeed despite a tongue tie; and many retrospective diagnoses are probably just plain wrong. This brings us back to increasing support for parents, training midwives not just in identifying tongue tie but in effective all-round breastfeeding support, and supporting the voluntary breastfeeding organisations to do more.

Because it’s true that health professionals and parents may focus on the suspected tongue tie to the exclusion of any other breastfeeding issues, particularly improving positioning and attachment, which could sort things out much quicker and – if it really isn’t a tongue tie – more effectively.

I can completely understand the anger that mothers feel when their breastfeeding experience has been disappointing or unhappy, and I understand why those mothers may feel that their experience is universal and if only the NHS and breastfeeding supporters could learn from it, we’d all do a better job. And I agree that we need to keep on listening to mothers and not focus solely on diagnostic tools. But I don’t think tongue tie is something that either we just don’t understand, or want to keep secret. It’s simply more complicated than 1. spot tongue tie; 2. divide tongue tie; 3. all is well.

Views expressed here are my own, and do not represent the views of NCT.