To feel utterly frustrated with the NHS and tongue tie treatment...

[SerialReJoiner]

When I had DD 3 years ago, we lived in the Midlands. She was diagnosed with posterior tongue tie at 4 weeks, but we were told that (a) the waiting list for revision was 8-12 weeks and (b) they wouldn't do her tongue anyway, because it was a posterior tongue tie so not a priority.

Never mind then, that she was constantly losing weight, that I was constantly sore, and that my milk supply was waning because she couldn't remove the milk effectively so it was a clear message to my breasts to slow down production.

We had the money to get the procedure done privately, but that isn't an option for many people. I still had to express milk and top her up for another 5 weeks before she was able to drink from the breast exclusively. It was a stressful time, and that was with all the support in the world from my dh, family and friends, plus top-notch advice from a local LLL leader who was happy to talk to me as I blubbed down the phone at her.

Fast forward to now, and DS is 5 weeks old. As soon as he was born I checked his mouth, and lo and behold he has posterior tongue tie as well. We are now living in the North West, and I accessed One to One Midwives for my pregnancy and birth. They put my name down for revision within their unit, and I happily only had to wait 2 weeks.

Today I took DS in for the procedure, and had a long chat with the midwife who explained how even though his posterior tongue tie didn't look "bad" from the outside, when she examined him it was clear that he didn't have full range of movement with his tongue and no wonder he has been so slow to gain. I've had to manage his feeds with breast compressions and topping up ebm as well, though it hasn't been as drastic as with DD because I caught it so early. (and yes, I had to diagnose him....)

I am frustrated with the lack of consistency across the NHS when it comes to TT treatment. If the NHS feels that "breast is best", why aren't they supporting TT revision then? And this isn't just about breastfeeding - my babies coughed, spluttered and choked at the bottle as well. TT can impact the ability to eat solid foods and cause speech impediments. It can cause dental issues.

Yes, the NHS is stretched, but a little snip at the beginning of a child's life can actually save ££ over the next decade or so.

I've learned a lot about tongue tie over the past few years, but I'm not a trained professional and don't know the inner workings of the NHS. Maybe I don't see all the nuances with this issue - but I'm still frustrated and feel like our situation is okay more due to luck and my bull-headed stubborn streak than anything else. There should be more support! Babies need tongue mobility to feed! Why isn't this a priority??

[Musereader]

I had my dd in manchester in the evening and the first midwife that came to do baby check the following afternoon asked about feeding, i hadnt managed to get her to latch at all for about 18 hours - she refused to look in the mouth (despite being asked and claimed it was so rare that couldnt be the problem at all) and just gave her a bottle of formula. Which was upsetting because i wanted to breastfeed and had been trying to put the breast in all day. Called my mum at that point and she came made a fuss and found a breastfeeding consultant.

Was transferred at midnight to another ward where i was met by a nurse who had me hand express so she could feed dd with a syringe, i spent the whole next day trying feeding and by the time the next midwife came for a baby check she was latching and feeding but she took a look and there was tongue tie so she put it on the notes and said she wasnt going to refer now unless i insisted as she looked to be feeding ok, if i wanted i could ask local mw to refer me at any baby check as it was noted but the procedure only takes a minute and could have been done on the ward right there once the dr came. I didnt have a clue and just left it.

At two week baby check i said that even bf was painful as dd only sucking half the nipple, so it looked like an 8 and she hadnt quite gained birth weight yet (only by a 100g or so) so i decided with mw to be referred to local hospital which was stockport (i had moved near the end of pregnancy) for tt and had an appointment when dd was 4 weeks old.

Tt snip done no anaesthetic, no bleeding, fed straight after and there was a difference because she managed to get the whole nipple.

[Musereader]

Just wanted to add dr in stockport thought it was quite bad and was comfused why mw in Manchester hadn't referred fo it to be done right then and there and i had to explain that mw in Manchester had seen me feed and had said sometimes it can look bad but not affect anything and sometimes it can hardly be seen but can affect everything, and dd appeared to be feeding just fine

on my nipples though the left one was bleeding by 3 weeks and the right one is no longer round.

[SerialReJoiner]

Just as an addendum to our experiences, although posterior tongue tie isn't seen as a big issue compared to classic TT, getting it separated has already made a big impact for DS. He is suddenly only needing to feed from one side, whereas just a day ago he needed both sides to be satisfied. That's a big deal, as far as I'm concerned.

[TronaldDump]

Serial DS1 had ptt and DS2 had almost 100% tt - but it was DS1 who was agony to feed and who struggled to regain his birth weight. Makes me so angry that it's not taken more seriously. Especially as there isn't even a private option available in many regions