Saturday, 21 January 2017

Our Battle with Tongue-tie

I'm taking the rare step of  writing about something not allergy-related, but which was a big part of our story in the early days - tongue-tie. Oh the things I so wish they had told us in ante-natal class!

Tongue-tie - just in case you don't know - is where the tongue is anchored down in the baby's mouth by some extra skin, or just membrane really, in the early stages. In our case it was like a line of skin, under the tongue. It stretched down the middle, from the back to the front, which tightened the tongue, forcing the tip of 'Baby's' tongue into the classic heart-shape. 

Once upon a time (so I have heard), all babies were checked at birth and it was common-place for midwives to snip a tongue-tie there and then. However, these days, some professionals believe it will just grow out by itself, and should be left alone, whilst others believe that it hinders a baby from feeding (whether by breast or bottle) and should be snipped. It's so confusing when medical professionals cannot agree on a given subject, following our experience... well I'll let you decide for yourself...

How it all began...

On the first morning after our beautiful baby was born, she was checked over by a pediatrician, who soon spotted her tongue-tie. 

'But it's nothing to worry about he assured us, she's got such a strong suck.

This he demonstrated by sticking the tip of his finger in her mouth. Instantly her sucking reflexes kicked in. We took his word for it.

At that time, and in that area of the country, tongue-ties were just not seen as a problem... 

'Oh don't worry, she'll grow out of it.' 

...we were told by the private pediatrician we saw four weeks later. But we were worried!

By this time, my boobs were already looking battle-scarred and feeding was getting even more tricky than I had found it in the first place! I was so desperate to breastfeed, but was dreading each and every feed. The pain was so excruciating, I quite often cried aloud, as she latched on. Meanwhile, 'Baby', oblivious to my agony, was feeding quite frequently...

'Feed through the pain,'

...was the frankly quite unhelpful mantra, I came across. But, feeling unable to cope, and on the verge of giving up altogether, I soon began to express off my worst side, and deliver the expressed milk through a bottle - hoping it would enable my (by now disintegrating) nipple to heal, as I just couldn't bear it. 

It wasn't meant to be this way...

I nearly gave up...

Not being able to express more than an ounce or so at a time, I reluctantly began to top up 'Baby's' feeds with a specially prescribed dairy free formula, but this was not what I had expected and was not at all what I had wanted for my little one. All my naive little first-time dreams of motherhood lay fragmented on the ground - HELLP syndrome leading to an induced early birth, forcep delivery, jaundice that had us readmitted to hospital, milk allergy and now THIS

At my wits end, and aware that The Hub was beginning to wonder who on earth this deranged woman that he'd married was. I'm pretty sure he hoped I'd give up and just switch to formula, but didn't dare say, for fear of upsetting me even more. I felt there really MUST be a solution to this thing and I was Googling left, right and center!

Tongue-tie came up every time - 'Baby' ticked all the boxes - including the 'clicking' sound as she tried to feed. But how to get help, when all the experts said it wasn't a problem??

The solution...

Fortunately, the Health Visitor, came to my rescue - she told us that in the next county there was a La Leche League breastfeeding counsellor who could assess us, for potential surgery. Desperate for help, we checked her out. Her room was packed with other unhappy mothers (and fathers) with their babies, all desperate for help 
and she was amazing! It didn't take her long to decide we were suitable and we were put down for the 'snip' by a maxillofacial surgeon.

I have to admit, I had my reservations - about my little one being strapped down and... what if the surgeon got it wrong? This was a daft thought, but I was pretty sleep-deprived by this stage - pumping and sterilising was going on day and night, so it was fair to say I was missing a quite a lot of sleep! Bizarrely driven on by my teaching instincts - I didn't want my child to be potentially mocked at school for having a speech impediment - we went ahead.

As it turned out, my doubts were assuaged, the moment we fed following the op (I say 'op', but because she was so young, it was actually over, quite literally, in seconds). We were taken to a side room to try her out, and straight away I could tell her gape was wider and she fed properly latched on - for the first time ever - without being forced on (as one nursing assistant had tried to do). 


The other thing I noted, was that her cry had changed - no longer did she wail 'Laa, laa,' she seamlessly changed to the 'Waaa, waa' sound, which you normally hear from babies.

Unfortunately, having got into bad habits, 'Baby's' latch slowly slipped back to her normal position and try as I might, I couldn't get her to feed the way I was 'supposed' to (I can't help feeling that if it had happened at birth, her latch would have been fine). BUT as my boobs healed (with, by now, the help of antibiotics, as I had developed an infection), the pain began to go, I was able to step up feeding, get her back off the bottle and properly breastfeed - the way it should have been all along!

Following on...

Since then, I have met soooo many other mums in the same boat, including, more recently, my younger sis', who has just been through the exactly same thing. For her, unfortunately it has taken multiple appointments to get properly diagnosed, and the operation, taking place at a later date, was far more traumatic than 'Baby's' had been.

Yesterday, I came across this petition online. If, like me, you would like to prevent others from having to go through the same problems, please sign this petition*, and then share it as widely as you can. 

Thank you!

And if you're struggling with breastfeeding too, for whatever reason, I would heartily recommend the following:

La Leche League

Kelly Mom

Further reading:

NHS Choices - Tongue-tie

La Leche League - Tongue-tie

* The petition reached the 10,000 signature stage and has been responded to by the Government. See how the Government responded:
It is for the NHS locally to ensure appropriate services are available to diagnose and treat tongue-tie. If there are problems with feeding, professionals should discuss options with parents.
It is important that babies with tongue-tie receive appropriate treatment and that appropriate support is given to their parents.
It is for the NHS locally to ensure appropriate services are available for the diagnosis and treatment of tongue-tie. Some babies with tongue-tie can still feed properly and do not need any treatment. If the condition is causing problems with feeding, health professionals should discuss the options with parents and agree the most appropriate form of treatment. For some babies, extra help and support with breastfeeding is all that is needed. If this does not help, the tongue-tie needs to be divided by a registered practitioner.
The focus of the Government’s infant feeding policy is to improve health outcomes for women and their babies; our policy is in line with the World Health Organisation’s recommendations to encourage exclusive breastfeeding for the first six months of life. Access to supportive services in the crucial early weeks can help women establish and maintain breast feeding successfully. Midwives and Health Visitors have an important role to play in providing information, support and advice to mothers and parents on infant feeding.
To assist the NHS, the National Institute for Health and Care Excellence (NICE) considered the division of tongue-tie in depth in July 2004. Current NICE guidelines recommend that, when considering division of tongue-tie, healthcare professionals should be sure that the parents or carers understand what is involved and consent to the treatment, and the results of the procedure are monitored. In line with NICE guidelines, NHS England expects healthcare professionals to discuss the benefits and risks with the parents or carers of any child.
The Department of Health does not set the content and standard of training for healthcare professionals. Health Education England (HEE) has responsibility for promoting high quality education and training that is responsive to the changing needs of patients and local communities and will work with stakeholders to influence training curricula as appropriate.
The content and standard of healthcare training is the responsibility of the independent regulatory bodies, in this instance the Nursing and Midwifery Council (NMC). Through their role as the custodians of quality standards in education and practice, these organisations are committed to ensuring high quality patient care delivered by high quality healthcare professionals. Healthcare professionals will be equipped with the knowledge, skills and behaviours required to deal with the problems and conditions they will encounter in practice. However, HEE will work with the NMC to influence training curricular as appropriate.
The UK National Screening Committee (UK NSC) advises Ministers and the NHS in all four countries about all aspects of screening policy and supports implementation. Using research evidence, pilot programmes and economic evaluation, it assesses the evidence for programmes against a set of internationally recognised criteria.

The UK NSC has not reviewed the evidence for screening newborns for tongue-tie. The UK NSC’s evidence review process outlines how to submit a proposal at
Information on tongue-tie (ankyloglossia) is available on the NHS Choices website at
Department of Health

Well it's not really the news I was hoping to hear. Sadly it appears nothing is going to be improved at this stage. The Government has passed the buck to local Healthcare Professionals and the training they receive. It's terribly ironic that just the other day I saw an article about Health Visitor numbers potentially being cut in Humberside.

However, I think it may well be worth submitting a proposal to the UK NSC (see second-to-last paragraph). The fight is not yet over!

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