An honest post about tongue tie

I've had so many people asking about this I thought I'd blog about it - and if this post helps just one person avoid the 7 awful weeks I had then I'm happy!

D (my first baby) had posterior tongue tie. It's only looking back now I have another (not tongue tied) baby that I can say with certainty what I can attribute to TT rather than "just being a first time mum" (I heard that line A LOT and it annoyed me then but now it annoys me even more that they were fobbing off a genuine problem as me being inexperienced). 

My lovely little man

I said this would be an honest post and here is the first confession. I have never had any training about tongue tie as a doctor. And to be honest before D was born I had a similar opinion to most doctors I know - that every parent seemed to think their baby had TT when usually they just needed more help to establish breastfeeding...

So what happened with us?

I could waffle for pages about the ins and outs of the first 6 weeks so for your sanity I have also précised it in a Summary/Bottom Line" at the end so you can just skip to there if you want :)

After birth D could not/would not/was not interested in latching. We were in hospital for 3 days and every feed was a huge battle. He couldn't get on and if, by some miracle, he did latch on he quickly 'slipped' off. He didn't seem able to keep his mouth open for long so you had a brief nanosecond to get the boob in before he clamped down with a vice-like grip (nothing like that baby in all the leaflets who just hangs around with his mouth open waiting for the photo to be taken...). Each feed was incredibly painful. I think every single midwife on the ward tried to help but nearly all of them gave up after a few minutes saying "oh he just needs to practise, it'll get better". I saw a "feeding specialist" twice and I was encouraged to hand express every 3 hours and then feed D the colostrum by syringe. I went home after 3 days but we hasn't really "established" feeding. I could just about keep him on long enough to get just about enough milk in him (so he wasn't dehydrated) but he never latched well, it always hurt and his poop was always green so he was getting way too much foremilk and not enough of the fatty hind stuff :(

This is NOT D. D could never have done this :( (nor is it me!!)

[above image from http://www.leicspart.nhs.uk/_OurServicesAZ-BreastfeedingandInfantFeedingsupport-HowdoIbreastfeed-Howtoachieveagoodlatch.aspx]

Looking back now I realise D was constantly hungry. He wanted to feed all day every day but the unbearable pain meant I just couldn't face doing it more than 3 hourly. And each feed took at least an hour. I used to cry in anticipation of a feed. I cried during the feed. And I'd cry afterwards as the pain continued for about 30 minutes post-feed due to vasospasm (not helped by him being a winter baby!).

I first saw a lactation consultant at 2 weeks, just after I got out of hospital (post mastitis bout number 1). She was amazing. Except for the bit when she said feed D whenever he looks hungry... that was so hard to do because of the pain. She suspected posterior TT but wasn't an expert so referred me to someone else. 

At this point I was in two minds. I felt something was wrong and that breastfeeding shouldn't be this hard or no one would do it! But I was naturally dubious about TT and also had my midwife and health visitor telling me it was normal to have this much pain and maybe I just had a lower pain threshold than other people... Anyway I saw the "specialist" who said he did have TT but his function was good so it probably shouldn't impact him. She offered to snip it if I wanted but said it wasn't necessary. I (obviously in my mind!) said no thanks then, if there's no need then please don't do it!

But then followed 4 more horrific weeks of pain after pain after pain. I was in agony. Even my bra touching me hurt. I was prescribed treatment for thrush as that can cause agonising pain. D wasn't gaining weight, only just going past his birth weight by 4 weeks, and by 6 weeks had fallen across 3 centiles. Breastfeeding was dominating our lives but not in a good way. And then I got mastitis again. Even more pain. Having to express every 2-3 hours - even at night, even when D was sleeping. I was exhausted. I was miserable.  I wondered why I was so bad at breastfeeding. I was at my wits end.

Super scrawny Doof. I didn't realise quite how thin his arms and legs were until I now see how "well-padded" his little sis is at the same age!!

 

So I saw the lovely lactation consultant again. She still thought there was TT and so referred me to someone else. This person, to be fair, had the benefit of seeing what had happened over the last 6 weeks - but she instantly said "posterior TT" and advised snipping it. 

The snip

D was about 7 weeks old. They swaddled him and then snipped the tie. Then unswaddled him and gave him to me for a breastfeed. That was it. He probably cried for 10-15 seconds max. 

But even that first feed post-snip... Completely different. He could actually open his mouth wide, keep it open and latch on properly. A.M.A.Z.I.N.G.

Ten minutes post-snip. Looks pretty happy to me :)

A month later... already cultivating little chubby cheeks!

Afterwards 

Oh what a difference. I actually started to enjoy breastfeeding. It took a while to be completely pain free as my poor traumatised nipples had to heal but there was no new trauma to them. D started to put weight on properly. Our life was no longer a horrible cycle of feeding-crying-feeding-crying. And I continued breastfeeding until D was 13 months (here is my post about my thoughts when I finally stopped).

Look what I can do with my tongue now!!

Thanks mummy for fixing my feeding problems!

Breastfeeding got so easy we could do it anywhere - this was in the backseat of our hire car next to the Hoover Dam :)

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Summary 

D's main symptoms

- couldn't keep mouth open for long

- couldn't latch properly

- couldn't sustain a latch if we managed to get one

- poor weight gain

- green poop

- always hungry

My main symptoms

- pain, pain, pain

- compressed nipples after every feed

- vasospasm (you see them turn white)

- recurrent mastitis (because he wasn't managing to empty the breast properly)

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Bottom line

Do I think some midwives/health visitors are very quick to blame TT when actually the mum might just need more breastfeeding help?

Yes

Do I think there are lots of babies with mild TT who can feed fine and do not need anything doing and should not have problems blamed on their TT?

Yes

Do I think there are a small percentage of babies who do have problems latching and feeding related to TT?

Yes definitely 

Do I think this can be missed by health care professionals?

Yes (especially if it's posterior as that is much harder to spot)

Do I think all paediatricians and GPs should be experts in spotting/diagnosing TT?

No, not really. They have to be experts in pretty much everything else. But I would expect midwives or breastfeeding 'specialists' to be able to spot it and advise where to get help. Because of this my first port of call for help would be a lactation consultant, not a doctor (one of the few times you'll ever hear me say that!!)

So what should you do? If you are having the problems I had with D above then it is NOT NORMAL, it is NOT because you are a first time mum, it is NOT because "breastfeeding is supposed to hurt a bit" as my health visitor told me!! If you can afford it then see a private lactation consultant. The £200 I spent seeing one was probably the best money I have ever spent. And I more than recouped the cost by then exclusively breastfeeding until D was fully weaned :)

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If you want any information I'd recommend KELLY MOM  for brilliant, evidence-based information on everything related to breastfeeding.