I read this article recently about tongue tie and the delays parents experience in getting treatment for their child. I’ve seen a lot of articles about it recently.
I’ve put off writing about this because it still feels so close and raw at times, but it is important. I’m glad that more people are starting to notice the woeful lack of support out there for tongue tie – especially for posterior tongue tie.
When PK was born, the midwife immediately told us that she thought he had tongue tie, and an appointment was arranged with the consultant before we left hospital. The consultant confirmed he did have anterior tongue tie and released it there and then. It was noted by the staff that his tongue tie had not prevented him feeding in any way.
It wasn’t until five weeks later, after he had lost 17% of his birth weight that we discovered this was less than half the story. Referred to hospital by the health visitor we eventually got to see an Infant Feeding Co-ordinator, who had been trained to recognise tongue tie. I told her I thought the tie had grown back – he wasn’t feeding well, my nipples were all but destroyed from the effects of him trying to feed, and we noticed many of the symptoms of tongue tie. She checked PK over and told me it hadn’t grown back. It had never been released. Or at least, having seen the anterior tongue tie, no-one had looked further and so had missed the posterior tongue tie which was so bad it stopped him being able to touch the side of his mouth with his tongue. We were lucky in that we were able to get lots of support from this point on, including the loan of a breast pump from the hospital, and visits from the health visitor every other day – just to be there, reassure me and support me.
What we didn’t have was an NHS doctor in our County who was trained in dealing with posterior tongue tie. Not a single one. We could ask to be referred to Derbyshire, where the only Dr dealing with PTT would release it under a GA but not with babies as young as PK. We would have to wait until he was 6 months old. Or we could pay for a private midwife who was trained in PTT to release it, which is what we did. She has since stopped her private practice to go back to working full time in the NHS and no longer deals with PTT.
Friends who have had this problem more recently, have found that things have got worse, not better, in the 18 months since we had to navigate these waters.
PTT is surprisingly common, but professionals capable of treating it are seemingly as rare as hen’s teeth. It shouldn’t be this way. Tongue tie affected over 15000 babies born in the UK last year and given that it causes (often huge) difficulties with breastfeeding, it’s something we should be tackling as a priority. The solution isn’t to simply tell mothers to use formula instead – many babies with TT struggle with bottle feeding too, and it has ramifications for later life too – we were told that unless the tie was released, PK would never be able to lick an ice cream, kiss, touch his teeth with tongue; he may also have affected his speech.
The treatment for the tongue tie took 15 minutes, and that included the time the midwife spent inspecting his mouth before the release and checking him afterwards. It involved no anaesthetic – it was done in our living room (with sterile implements obviously) and when it was done, we all had a cuppa whilst I tried to coax PK to try feeding again.
So I ask again, why is it so difficult to get treatment on the NHS, even in hospitals who have a consultant who deals with TT? And what can we do about it? A first step, I think, is to contact our MPs requesting that they ask why there are so few people able to treat tongue tie, and that’s what I shall do.