Tongue tie support

[Danikm151]

www.bbc.co.uk/news/uk-england-bristol-59474606

Was interesting to see this article on the bbc today.

We’re in the midlands and my son was identified as having tongue tie on day 2 of being born. This was by a very experienced midwife, the feeding midwife didn’t notice and she even checked his latch. His appointment with a consultant(scheduled for 4 weeks old) was cancelled due to covid so I had to go private to get him treatment. By then my milk supply was struggling and he was even struggling with bottles. Support wasn’t really available.

There isn’t enough support for tongue tie. I think it should be addressed during newborn checks rather than having to wait, I was sent off with a letter for an appointment and told to pump milk whilst he couldn’t latch. It should be covered in midwifery training.

I agree with you. Despite DS feeding for literally hours in end abs me crying with exhaustion not one HCP mentioned TT. It was only when I was PG with DC2 and joined MN that I realised what had been going on.

It hasn't got any better, so it seems.

My second had TT over q5 years ago. I spotted it because I had been doing BF peer supporter training.

I asked that it be noted on her notes while I was in the hospital. Got brushed off. Paed Consultant who wS signing us our said "We don't snip these unless it causes problems with speech". I was agog.

It did cause problems with her latch.

In the end, I sought help privately and got her treated. It shouldn't have relied on me being the one to spot it and push for treatment.

Sorry, fat fingers!

After DS was born I first had a bit of an ordeal getting a botched episiotomy stitched up, then I spent half an hour unsuccessfully trying to latch DS. Then the midwife took him for his newborn checks. When she handed him back to me she said that he had tongue tie but tongue ties aren’t routinely cut these days because they don’t necessarily cause feeding problems. On the postnatal ward a few of the staff tried to help me to latch him on but they had so many other mums to deal with that they couldn’t provide much help. After that the only support I received was an unexpected phone call from a breastfeeding counsellor which arrived at the most embarrassing moment possible (that’s a story for another day). I was very lucky to get a tip-off from another mum about using nipple shields, if it wasn’t for her advice I would have given up long ago.

Ds3 had a tongue tie which I was lucky enough to have diagnosed by the local breast feeding peer support group. They had an informal arrangement with the ENT department and we were sent off for a snip that afternoon. It took moments, I don’t know why it can’t be more widely available.

I’m in the midlands too OP, curious which hospital you delivered at?

My experience was pretty dire DC1 told no tongue tie even though my nipples were black total hideous lack of bF support on mat ward.
Dc2 insisted on seeing infant feeding team who said he looked tied only then for the midwife on discharge to totally dismiss it and say it was very minor and wouldn’t cause issues. Luckily I knew better and got it divided on day 2

Completely agree OP. Lots of pressure on mothers to breastfeed, yet there are many who want to BF but can’t due to lack of trained support

I gather midwives used to be trained in spotting TTs but aren’t any more. Such a shame.

I was told by two NICU nurses and the hospital breastfeeding counsellor that DD didn’t have tongue tie. Yes she most definitely did, as I found out 15 very hard weeks later. Was only able to BF as I had massive oversupply and basically squirted milk into DD rather than her latching 🤦‍♀️

Our DD is 2 weeks old and have had exactly the same issues.

I had latching issues straight after birth and was told that my nipples were inverted (they aren’t) and that I’m too fat to breastfeed. I was given formula but DD couldn’t latch onto the teat because it was nipple shaped.

My community midwife visited us in hospital and identified the tongue tie after plenty of HCPs visited and didn’t even think of looking in her mouth - I was told that it would take 2 appointments to identify if we qualify for the procedure.

We decided to go private for the procedure and found out a week after the midwife who did the procedure privately is due to be reviewed by the board and pretty much can’t be employed by the NHS. I also heard from other Mums that the same woman did the procedure so poorly that their scar tissue formed over the bottom on the tongue.

Apart from that, I’m trying to BF using nipple shields but DD is very content on formula and my boobs aren’t feeling as full as they previously were. I’ve given up on the idea of EBFing and will continue feeding when I can on shields until everything naturally ceases.

Tongue tie support doesn’t exist and finding out the background of private HCPs is also frustrating - I was horrified that we shelled out a small fortune on a procedure which could’ve cause more harm.

Had a similar shoddy experience with the NHS with my second 7 years ago now. He had a 50% posterior tongue tie that even when snipped (3 times!) didn't fully resolve. He didn't get on much better with a bottle so despite it being really difficult and often painful I carried on feeding him. I'd bf his older sister til around 20 months and wanted to do the same for him. I managed about 18 months with him which is nothing short of miraculous.

There was a lovely supportive infant feeding midwife at the hospital, who was trained to snip tongue ties, but she wasn't allowed to do it, could only be done through ENT where it was impossible to get an appointment soon enough. She wasn't even allowed to explicitly name the private contact she had, instead having to say 'if you Google xxxxx in xxxxx....'. Her ambition was to have a team of midwives trained up to snip tongue ties as soon as they were identified although I doubt she was able to achieve this and she has now sadly retired.

Where is the care and support for women and babies within the NHS? There are some lovely people within it who do care but as an institution it feels rotten at times.

Midwifes (4), pediatrician's (3) and HV all looked at my baby and said "No tongue tie!." He wasn't putting on weight and eventually an infant feeding specialist took one look over a rubbish phone connection and diagnosed a posterior tie which was fixed privately, he was almost 3 months old and it was only determination that got us through. I was having to feed, express and give a bottle at each feed as well as care for 2 and 4 year old. I wish they would include it in midwifes training and deal with it then and there. It is a simple procedure!