Tongue tie advice please

[YorkshireRose12]

My DS was diagnosed with a tongue tie by the midwife at 5 days old, which came as something of a relief as feeding had been making me very sore and I had a large crack on my left nipple. I was sent on to the infant feeding advisors at my local hospital who I was told would refer me to have the tie snipped. However, they said the tie wasn't serious enough to interfere with feeding so they wouldn't refer me and the problems I was having could be sorted with improved positioning and attachment. I went away, practised positioning and attachment and returned a couple of days later where they said it was much better and things should start to improve for us.

DS is now almost 5 weeks old. My right nipple is completely healed and I can feed from that side pain-free. There is however still a large crack - almost like an open wound - the whole way across my left nipple which has never healed and makes feeding on that side agony.

I have tried everything: giving that side a rest and expressing but it still didn't heal and DS didn't gain enough weight the week I was doing that so the HV advised to go back to feeding on that side; shaping my breast to get as much in as poss and the nipple as far back as poss; exaggerated latch (which I think I'm doing right); using my pump to draw out the nipple
before feeding because it is a different shape - quite a
lot flatter than the right one - but still no joy.

DS and I are now on medication for thrush since last Thursday in case that is what is causing it not to heal and I have seen an improvement in that it is obviously trying to heal between feeds which it wasn't doing before. However, every time I latch him on to that side, no matter how patient I am waiting for him to open his mouth really wide and attach away from the nipple, it seems to open the wound up again and we're back to square one. It makes the beginning of feeding agony - toe curling, feet stamping, swearing agony - makes me bleed and means it's just not healing.

From watching DS when he attaches I think the problem is that his tongue is sort of poking around in the middle if his mouth rather than being properly 'out' and covering his lower gum IYSWIM, so it then makes
contact with the nipple and aggravates the crack. After around 30 seconds or so it seems to settle and I can then feed without pain although he does sometimes slip up onto the nipple - this happens on both sides - and I then have to take him off and re-attach him.

So... do you think the tongue tie could be the issue here? Can a tie cause problems more on one side than another? I trust the feeding advisors when they say it's not a severe tie - they're the experts - but they also told me that a millimetre or two can make all the difference with the latch. If getting the tie snipped could be that millimetre's difference then I would want it to be done. We simply can't carry on as we are, I really want to exclusively BF and DS is now doing really well - 12 oz weight gain in a week! - but I dread feeding on that side and can't feed in public on that side because of the difficulty attaching and the pain. I can't not go out for the next year so if I can't BF and heal on that side I think I might be forced to give up which makes me really sad.

What do you think/WWYD?

Join the tongue tie babies support group on facebook (it is a closed group but just ask to join), there are some real experts on there.

Often hcps don't understand about tongue tie (even the ones running tt clinics sometimes). If they are saying that it's not a severe tie, I would guess that what they probably mean is that it's a posterior tongue tie with not much to see and believe me, posterior ties can be just as severe as any other. There may be a lip tie as well which can cause problems. Something that is usually dismissed by hcps here as unimportant.

this guy is one of the leading experts on tongue tie

The 12oz weight gain is also a symptom of tongue tie. If a baby can't get a deep enough latch, they get the lactose rich milk which is easier to access and it is high in sugar causing rapid weight gain.

Having revision done properly requires a three way approach. You need someone to do the revision (there is a dentist in Huddersfield doing laser revision, everyone else uses scissors), a bodyworker such as a cranial osteopath to work on your baby before and after revision, before can release the tie a bit more for a better revision and after to help release the tensions caused by the tie and you also need to work with a IBCLC (lactation consultant) to help with suck training and latching after the revision.

good info here

HTH

Thanks, mawbroon, for the advice. After posting this morning I decided to go to a feeding clinic at another local hospital for a second opinion. They said the latch was near on perfect and immediately diagnosed a very tight posterior tie which was causing DS's tongue to rub againt ny nipple throughout the feed and snipped it there and then. A bit distressing for both me and DS, but it seems to have made a huge difference in how much he can move his tongue - he's spent the whole day poking it out at me! I have fed him plenty since he had it
done and it's mostly MUCH more comfortable, an immediate
improvement. They've also shown me how to latch to try to correct the tongue positioning that he's learnt over the last few weeks and ensure my nipple stats well away from his tongue until he's got used to how to use it now it's freer. Hopefully [desperately crossing fingers] this could be the beginning of the end of the agony and dreading feeds!

I'm glad to hear that things have improved for you so quickly!

Did they advise you to stretch the site to avoid reattachment? Again, some hcps don't think it's important, but it seems obvious to me that if you cut the body, it tries to heal itself!

dr kotlow I can't get the doc to open on my computer for some reason. Look for the article called something like "breastfeeding should be fun and enjoyable" and about half way through it, there are instructions for stretching and massaging the site.

Also, if the cracks still won't heal, it would be worth asking you doc to swab your nipple to see if there is any infection in it preventing it from healing.

Do you think you have thrush? If so then baby needs to be treated as well. Sometimes the pain caused by tongue tie is mistaken for thrush and stops once revision is done and a good latch achieved.

Yay to the second place for recognising it! I was going to reply and suggest a second opinion, as "the tie isn't serious enough" is a big red flag that people don't understand about posterior ties... Glad you got it fixed.

I echo mawbroon about the stretches -- they are very important for posterior ties, as that part of the tongue rests on the bottom of the mouth naturally except when the tongue is moving in feeding, and so posterior ties are very prone to regrowth. Knowledge among HCPs about posterior ties is only just starting to grow, so not everyone will know the issues.