Thursday 30 August 2012

Tongue- tied

Breastfeeding that is.
Most folk who know me know I've been pregnant or breastfeeding or both for the last 7 years. I've been lucky enough to not have any bother feeding the girls, but it seems with No 3 my luck has run out.
Just to back track a bit, I've always felt lucky to get a good start at breastfeeding- it took a couple of days to get a blood transfusion, and that meant being able to get reassurance and help for every feed, night and day for 3 days. I suspect if I'd headed home quicker I wouldn't have had the confidence all was well, and we'd have stopped fairly soon.

Jumping back forward to my third pregnancy and feeling so ill, that blood transfusion(my hb drop was unexplained) was probably to do with low ferritin which has only been picked up 6 yrs later as the NHS doesn't routinely check it.

Ah, the good old NHS. It provides my family with an income, but for healthcare/treatments I'm beginning to feel let down.

This pregnancy I realised something important to me is knowing who'd be there when I was in labour. Unfortunately that would take having a lot more midwives to manage the on-call. A friend who is one thought they could possibly manage to be available if I laboured during the day, but I'd feel uncomfortable getting a favour when other women may well want that kind of care, and who knows when I'd labour? I certainly didn't expect it to be during the day!
So we went with the alternative as the NHS couldn't meet my needs, and hired an Independant Midwife. Susan's been fabulous, even more helpful and wonderful than I could have imagined, but we've also had to pay about 1/4 of my annual income this year to have her wonderful support. Next year her job becomes illegal as the government believes indemnity insurance makes good practitioners (personally i believe passion, education and experience is more useful).
Anyway, my lovely challenging third pregnancy has duly evolved into a lovely beautiful third child, but the challenges haven't stopped.
I could go on about nappies and elimination communication, but those challenges have been tiny compared to the last few weeks feeding.
It all started fine, just his latch didn't seem great- he'd start well but slip off a bit more easily than I'd expect, but no pain. A little less weight gain the first week, but I made a point of sitting up for night feeds and it seemed to be ok. At 3 weeks things still weren't great, so I went to babycafe in case some positioning support might do the trick. Hmm, I was already doing pretty much everything suggested, but I planned to try a bit harder.It wasn't hurting much then. At 4 weeks I had a stomach bug so I wasn't concentrating on anything much, but when he was 5 weeks I went back to babycafe sure we had a problem, but no idea what it was. I have nephews with a tongue tie/ cleft palate and my sister had warned me back with my first child to be aware of these things, so I asked for tongue tie to be ruled out. Ah, but there was something. Not a 'proper' tongue tie, but his tongue is slightly tethered at the back. Who they refer to wouldn't divide it, so the advice was getting good positioning and possibly trying cranial-sacral therapy. I came away feeling vindicated- there is a structural reason I'm in pain, but gradually realising I pretty much have to just put up with it.
Now luckily for me I was aware of other help out there- I know Analytical Armadillo and was vaguely aware of reading stuff about tongue ties some consultants won't treat impacting on breastfeeding. Also, her kids benefitted from osteopathy- so if nothing else she could hopefully recommend someone local. My friend very kindly assessed Little Man, and was sure what she could see and feel would affect breastfeeding. Her colleague had a check too, and assessed it as an 80% tongue tie, which she could divide that day.
At this point I was a little overwhelmed- 2 days prior I'd found out there was a real problem, but only minor, and now it was definately enough to treat...I needed more time to think it all through, and ensure we had the money (I'd've felt awful if we'd gone ahead but not been able to pay straight away- we're careful to avoid debt).
I've spent the last 5 days on internet forums,a facebook group, and most importantly to me saw a couple of folk in real-life yesterday who've had children with undiagnosed/late diagnosed tongue ties, and then been on the ball with subsequent children for early division.

I've been back to babycafe again just to be very sure- the local NHS guy definately won't touch it, and they haven't anything else to offer.

Nobody else is in my shoes-I don't have blood and wounds showing, baby is gaining weight well. The only problem is the one I can feel, and I know feeding doesn't have to be painful. I'm also aware that the thought of feeding like this longterm is not possible- I would have to stop and be incredibly upset if I had to stop.
So, again, an aspect of the NHS isn't meeting our needs. This one is to do with Little Man's longterm health -artificially fed babies are more likely to be ill and cost the NHS more, as well a parent needing time off work for caring for them- if you want references please go the Analytical Armadillo's blog, but even better read The Politics of Breastfeeding by Gabrielle Palmer.Don't let the title put you off (it did put me off, I didn't read it until I'd been a parent for about 4 years) its really about how advertising and governments have affected out culture and infant feeding in general (even more relevant to parents who use artificial milk, tbh), but I can't think of a snappy title for it :) My copy is out on loan somewhere, I think- if you have it can I have it back to pass on to someone else?

So, I feel my best option is to pay to have the tongue tie divided, go to an osteopath, and hope feeding improves. If it doesn't and I have to stop- well, I truly feel I can say I've done my best with the information I have now. In months or years to come I may learn something different, but you can only do your best with the information available at the time- I hope to leave parent guilt behind.


  1. So sorry to hear they won't divide it. I've been very lucky in that we have a wonderful tongue tie clinic here led by midwives who have also completed the peer supporter and other breastfeeding training, but they clip ties for bottle-fed babies too as it can cause problems with that too. In fact, the three times I have attended the tongue tie clinic (once with Theakston, twice with Nyah), I was the only breastfeeding person there. I was even offered a private room to feed in and test the 'new' latch and work on positioning because the general area was busy with bottle-feeding mothers and I guess they thought I'd feel awkward about it. I didn't, but it was more comfortable in there ;)

    I hope you find the money/justify the expense (if that makes sense?). It does make the world of difference to baby and you. I couldn't believe how blissfully easy breastfeeding was after a week of feeding Theakston with a tie. I just thought your baby screaming in distress all night and being latched on 24/7 and colicky was "normal" as he was my first (although some newborns are like that!). He was like a different baby afterwards. As for Nyah, I'd done my peer supporting by then and could spot a tongue tie a mile off and had to battle a few midwives before I got lucky (well, not, because the circumstances weren't pleasant) with a paediatrician who agreed with me and referred her instantly. After that, I had their phone number and when I realised it hadn't worked I went back for a re-snip as they hadn't gone far enough back and I could feel the difference when feeding as it was painful for me, as opposed to her showing symptoms.

    Good luck, I hope you get it sorted x

  2. thanks so much for sharing Sammy.
    Our local babycafe is also highly spoken of- i know of mums driving from several hours away to get there, IBCLCs, etc. Just unfortunate the local chap doesn't do posterior ties. We have an appointment for Saturday, so fingers crossed that does the trick.

  3. Did it go well? Sorry I always forget to sign up to replies so only just seen this post!