Tongue tied. What should I do?

[Becklouise]

I am breastfeeding my 6 weeks old and she is tongue tied but no one is helping her. I dont know what to do. I've contacted my health visitor and GP but they aren't doing anything about it. Last week my health visitor pointed it out to me. I'd never heard of it before until she mentioned it. Ive done some research and we are ticking almost every box for tongue tie and you can see where the tongue tie is on her. My baby is in alot of discomfort and is finding feeing more and more difficult each day. She's really unhappy most of the time and I'm exhausted trying to comfort her. I contacted my gp who told me she isn't qualified to do anything about it. And my health visitor told me that if baby is struggling with feeding then I should stop
breastfeeding and bottle feed her instead. I absolutely do not want to stop breastfeeding! I want to do breastfeeding for as long as possible. I dont want to miss out on breastfeeding and lose that bonding time with my baby because no one is willing to help. I'm actually really upset that I'm told to give up breastfeeding! What do I do to get the help we need?

So sorry OP sounds really frustrating and should of been picked up before now and certainly action should of been taken, my little one had tongue toe picked up at birth we had the option to see how it would go or to get it sorted ( it was just a quick 2 minute appointment where they snipped it at the hospital) our issue was the wait time was so long many people were going private which I was prepared to do but as o said I would travel to any hospital they managed to book us in to a hospital nearly 2 hours away. I would speak to a different GP and ask for a referral to the hospital to get it snipped. Hope you get sorted soon

Are the breastfeeding clinics open in your area? My DD struggled to latch but I was told she didn't have an obvious tongue tie by midwives and health visitor. I attended a couple of breastfeeding drop in clinics and managed to get referred to a lactation consultant who diagnosed a severe posterior tongue tie. Can you ask that the health visitor refer you for another opinion?

The consultant arranged for it to be cut on the NHS a week later (DD was 6 weeks).

Someone from my NCT group paid to get her DDS tongue tie cut privately due to the wait in her area, she got a private referral through the breastfeeding support of the NCT class.

Do push for help, they shouldn't be dismissive of your concerns.

We had it done privately as the process to get it on the NHS was v long and would essentially have meant I gave up feeding, as it was so, so painful and my baby wasn’t happy either. That may not be an option for you, but if it is look up the tongue tie practitioners website and you can find someone near you. They came to my home and did it in no time (pre covid).

P.s. One way of considering the cost of it being done privately is to set it against the cost of formula you’ll be buying if bfing doesn’t work out.

I’m so sorry you are going through this. The care you have received sounds shocking so far. If finances can stretch to it, can you afford to have it done privately? I think it cost us about £120 - off the top of my head it was about £40 for the assessment then £80 for the procedure. Had it sorted in 48h where as the NHS said 4 weeks 🤦🏼 Good luck x

Get it cut privately! Search for lactation consultant near you. Nhs were useless near me. Got it done so quickly. Breastfed really well ever since, now 18 months old.

I'm sorry to hear that you are having these problems. My son was tongue tied and diagnosed at about 6 weeks too. In my case the health visitor referred us to the clinic at the hospital and it was sorted very quickly.

My friend on the other hand had twins a few months back and she had to contact the clinic at the hospital herself to get a diagnosis. It was the same specialist that I saw but a change in procedure. It might be worthwhile researching the name of the tongue tie specialist in your local hospital and self refer.

Fingers crossed that you find a solution

www.tongue-tie.org.uk/find-a-practitioner/

Another one saying go private, we did with our 7 week old a few weeks ago as NHS was 3-4 week wait and it can hurt them more the older they get.
Privately assessed and cut the same day, no regrets

My tongue tie wasn’t diagnosed until I was 11, after years of speech problems. I had it cut in hospital, which involved staying for 2 nights and a general anaesthetic, and then had to have lessons to learn to use my tongue properly.

You’re right. It’s very much worth getting it dealt with now.

You don’t need to stop breastfeeding if you can pump? The hv spotted a TT in my baby too. I decided to get it cut privately as there was a 3 month wait. I was in agonising pain when feeding so I mix fed formula and pumped my breast milk. I just fed off the breast as much as I could bare. It took two weeks after the revision for him to latch properly and I then went on to fully bf till 15 months.

Feel for you it is bloody hard they get so unsettled don’t they. I’d go private it was the best £120 I spent.

OP have you got anywhere with this? I have an 11 week old DS who is bottle fed (I express) as he had issues with latching since day 1. However, no one has mentioned tongue tie up until last week when my HV casually mentioned it to me. I did a bit more research then and found that DS ticks almost every box for TT (and I think I can see it as well although obviously I’m not a doctor). I went to see the GP and got completely dismissed. She basically told me to leave her alone with this (her exact words!) as TT does not impact feeding or speech at all. I am desperate to find a solution as it takes over and hour for DS to finish a bottle and I’m dreading to think about what’s going to happen once he starts taking higher volumes/less frequent feeds (although at this rate I don’t see that happening the prospect of which, again, is a bit daunting as I don’t want to be feeding every 2-3 hours forever, for over an hour at each feeding).

Thank you

She basically told me to leave her alone with this (her exact words!) as TT does not impact feeding or speech at all.

Bollocks it doesn’t.

@EmpressWitchDoesntBurn

She basically told me to leave her alone with this (her exact words!) as TT does not impact feeding or speech at all.

Bollocks it doesn’t.

I know I’m actually really annoyed she fobbed me off so easily especially after doing a proper research now. She was also incredibly rude and dismissive, she made me feel rubbish about myself, made it sounds like I was talking complete nonsense.

I will speak to my HV tomorrow but I’m tempted to just go private and get it assessed. I can’t be bothered having to fight GPs and prolong this for any longer than necessary.

I don’t know what kind of TT I had but I’m happy to be cited as someone you know whose speech was fucked until the operation. 35 years later & I still can’t blow up balloons

No keep pushing

We had it fixed no issue but I had a really helpful referral

@ProudFTMum. Your GP doesn't know what she is talking about and was very irresponsible to say that to you. Tongue ties are graded from mild, to moderate, to severe and while a mild TT may not cause problems, moderate or severe TTs often present huge feeding difficulties.

I would recommend to have the TT divided privately if you can afford it and are not getting anywhere with an NHS referal. It costs in the region of £130. Do bear in mind though, that it can take between 2 and 4 weeks for a big improvement to be seen, while the baby relearns how to use their tongue. It is well worth it though.

My DS had a very mild tongue tie clipped at 9 days old. Your healthcare professionals sound completely useless - it’s a simple procedure that takes a second and is done by a specially trained midwife and doesn’t require any aftercare, I don’t understand why they can’t just sort it for you. You definitely shouldn’t have to go private. See if you can get a second opinion from somewhere.

Please push hard with GP and HV. This should have been cut by now.

Just wanted to say that with my firstborn I was unable to breastfeed so chose to exclusively pump for year instead so that he would still have my milk. It's definitely not the right choice for everyone and has pros and cons like all feeding methods, but just wanted to say please don't be led to feel that your only two options here are breastfeeding or formula feeding. (I assume from your OP that when your health worker says bottle feed she means formula and not expressed milk).

@Somethingsnappy thank you! I will speak to my HV tomorrow but if no luck I’ll just go private, I don’t want LO to struggle any further! The sooner this gets looked at the better, I don’t understand why our GP was so rude and dismissive about it...

@ProudFTMum my youngest had TT (had it cut pretty late). It was done by a 'feeding coordinator' (I think that was the title) at the hospital. I'd ring the midwives where your DC was born and ask them if they have someone who cuts TT and if so to transfer you.

Just wanted to add something in case it's useful to anyone on this thread.
DC2 had a tongue tie removed recently, as an adult, because it was causing them problems (a large tongue tie, getting trapped between their bottom teeth). For some very good reasons, I was unable to breastfeed them beyond two weeks, so it wasn't really picked up, but it still needed treatment.

Both my DS were TT, DS2 so badly he was completely unable to latch and I had to pump for him until it was snipped privately on day 8.

Google "the association of tongue tie practitioners" they have a list of people who can divide the TT privately.

Once DS2's TT was divided he was able to latch with nipple shields, then moved him off those slowly and he was ebf from then onwards. Still bf and has just turned 2!