Tongue-Tie Trouble

What is a tongue-tie?

Interestingly enough, Gurgle magazine (it’s really good, you should subscribe to it!) has an article about tongue-ties in their July edition but as they explain it pretty well, here’s an extract:

Ankyloglossia, to give it its proper term, is a congenital condition (meaning it’s present at birth) that affects four to 11 per cent of newborns, depending on which medical journal you read.

So what is it? essentially it’s an unusually tight frenulum – that’ the sinewy piece of tissue joining the tongue to the floor of the mouth. It tends to either be too short or extend too far toward the front of the tongue, so it’s difficult – or even impossible – to lift, move or poke the tongue out.

Mother’s instinct

I first noticed Jack had a tongue-tie when he was about a week old and mentioned it to the midwife on our 10 day visit. She had a look and was quite surprised that no one had picked up on it before so suggested that I mention it to the doctor at our six-week check up.

Well I did and “Doctor Dickhead” as I like to call him* told me in no uncertain terms that tongue-tie was very common and didn’t cause any problems for people with it. It wasn’t a “medical” issue and therefore he would do nothing about it unless it was causing a problem with feeding (which it wasn’t).

My mum used to be a speech and language therapist so I knew that from her experience of working with children who had a tongue-tie that it could potentially cause issues with speech later on as well as other problems. I didn’t want that for Jack so I did some more research which backed up what my mum had told me and sought a second opinion in the form of a breastfeeding specialist.

This isn’t Jack but it’s very similar to how his tongue-tie looked

Although Jack was feeding well from the breast and I wasn’t suffering from any pain, when she checked, the specialist was surprised at how small Jack’s tie was but also how stretchy it was which would probably explain how we had been able to feed ok.

When assessing a tongue-tie, it is marked on appearance and its ability to move and Jack scored just under the level recommended for a procedure called a “frenotomy” to effectively “free” the tongue. The specialist said that a lot of people are able to function fine with a tongue tie – James is one of them – so suggested that as Jack was feeding well, putting on weight and I wasn’t in any pain feeding, to see how we got on and come back if anything changes. So that’s what we did.

Fast forward to two weeks ago

The last eight weeks or so, I’ve noticed that Jack, although putting on weight and seemingly feeding as normal, hasn’t been putting on a lot and dropped a percentile on his chart. Everyone I asked told me that it’s quite common for babies not to follow the line all the time and only to worry if he dropped two centiles within 8 weeks. They also said that it was common for breast-fed babies to have slightly slower weight gain between 3-6 months and that as he has had a number of colds recently, that could have also been a factor.

But, the worrier that I am, I started to get a bit anxious so decided to go back to the feeding clinic and to have his tongue-tie checked again. I’m glad I did!

This time we had a different specialist and we started off by having a chat about what was going on. I explained about how I was worried about Jack’s weight gain etc but she seemed pretty confident that seeing as he was now 5 months and was a very happy, and healthy child, I was probably worrying over nothing. Then she did the tongue-tie assessment and I literally saw her face change and surprise took over. Turns out it was a very significant tie and had got worse since our first assessment. She actually said she was astounded that we had successfully breastfed for so long with it – which made me feel really good about myself!

Now usually they will only perform the procedure to cut the tie at the feeding clinic before a baby is six months. After six months, because the baby is usually more wiggly and the tie thicker, they would have to be referred to King’s Hospital in London and put under a general anesthetic to have it done. Jack was 2 weeks off being 6 months at this point so things had to move quickly.

The specialist told me how the procedure was done, the risks involved and after discussing it further with James at home (and watching a few YouTube videos of it being done), we decided to go ahead. We felt that although it would be horrible for Jack at the time, the long-term benefits far outweighed the risks or the stress of having to go to London to have it done when he was older.

Frenotomy day

I barely slept the night before. I was so worried about how Jack would be during and after the procedure. Would he be too wiggly for her to do it so we would have to go to King’s anyway? Will he be able to breastfeed afterwards? Will he hate us for agreeing to it? What if it doesn’t even make a difference? I think we built it up more in our heads so were quite nervous  about it. We felt so guilty knowing that he was going to have this procedure done and he hadn’t a clue – he was smiling and giggling right up to the moment of impact!

Turns out it wasn’t as bad as I had feared. We had to swaddle Jack so he wouldn’t be as wiggly, then James had to hold his head still whilst the tongue-tie specialist lifted up his tongue and snipped the frenulum with special tough cut scissors. It sounds  pretty grim but it was done so quickly and was over in flash.

I was expecting Jack to really scream but it wasn’t as bad as when he had his vaccinations and he went straight onto the breast which calmed him down a bit.  There was a bit of blood at first which wasn’t nice to see as he fed but the feeding helped it stop (breast milk is amazing isn’t it!) and within ten minutes he was back to his normal happy self.

Did we make the right call?

Although it wasn’t nice at the time, we both agree that we made the right decision. Jack’s tongue healed really quickly, feeding seems to be going ok (he’s gone up again on the weight chart and is now 16lb!) and he can now stick his tongue out, wiggle it around and lick stuff which he couldn’t do before. Fancy not being able to lick an ice cream?!

We’ve got to keep doing tongue exercises with him and keep an eye on it to check it doesn’t grow back but I’m glad we did it when we did and he’s probably forgotten about it already!

Does your baby have a tongue tie?

If you are experiencing any of the following, see if you can have a peek inside your baby’s mouth as they might have a tongue-tie too. If you think they might have, it might also be worth speaking to a feeding specialist or your GP for further advice.

If you are breastfeeding, you may notice your baby;

• has difficulty attaching to the breast or staying attached for a full feed
• is feeding for a long time, having a short break, then feeding again
• is unsettled and seems to be hungry all the time
• not gaining weight as quickly as they should
• make a “clicking” sound as they feed

or you may have;

• sore or cracked nipples (mine weren’t sore but I did notice they would go a little white at the end of feeding)
• low milk supply
• mastitis

Your baby may also have;

• difficulty lifting their tongue up or moving it from side to side
• difficulty sticking their tongue out
• their tongue looks notched or heart-shaped when they stick it out

More information can be found on the NHS Choices website: http://www.nhs.uk/conditions/tongue-tie/Pages/Introduction.aspx

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* “Doctor Dickhead” is our appointed GP at our local surgery but he’s a horrible little man! He makes me feel stupid every time I see him – he looks down at me (even though he’s actually really short) with a look on his face like I’m an idiot and makes me feel like I’m just wasting his time. He’s also always chewing which I find really annoying. Anyway, usually I ask for one of the other doctors who are brilliant but as our appointed doctor we had to see him for our 6 week check.

So if you have a Doctor Dickhead too, don’t be afraid to seek a second opinion and go with your gut!

References:

Gurgle Magazine, July 2017 addition –  https://www.gurgle.com

NHS Choices 

Photos:

http://www.nhs.uk/conditions/tongue-tie/Pages/Introduction.aspx