Desperate to establish breastfeeding - severe tongue tie.

jefl · 2023-11-19T14:23:27+00:00

I gave birth to my DS 11 days ago now and at birth he was diagnosed with a severe tongue tie. I had my heart set on breastfeeding and in the hospital no one was able to help him latch. It was awful with him screaming and a midwife trying to shove him onto me which resulted in me in tears and him being given formula. I have been referred to the infant feeding teams in our two closest hospitals to have his tongue tie treated but have not heard anything back in over 10 days. I thought I'd found a light at the end of the tunnel when a midwife suggested maybe getting private treatment for it and we had managed to get an appointment with a private consultant in Exeter however I have found her CQC report and was mortified so have cancelled it. I'm now feeling that we will never get breastfeeding established and even my DH has suggested I just give up and fully formula feed as spending 3 + hours a day pumping is making me miserable and exhausted ontop of having a newborn. I really don't want to formula feed him but can't continue like this. Has anyone had any success at establishing breastfeeding when baby hasn't ever latched in the first 2 weeks?

Mamato29192 · 19/11/2023 14:27

Definitely keep trying to get it cut. Once it's cut you will be able to establish breastfeeding

jackstini · 19/11/2023 14:35

You need to be the squeaky wheel - call the feeding teams daily, keep asking health visitor, mention it is affecting your mental health too

As soon as it's cut, establishing bf will be so much easier. So sorry you have had to wait this long already

Have you contacted la leche league for advice?

QualityNeverGoesOutOfStyle · 19/11/2023 14:38

Yes, my son was exactly the same and didn't latch for 3 weeks until we got his tongue tie cut. The pumping was really difficult but made easier knowing that it was a means to an end, rather than thinking it would go on forever. I did top up with formula though to take some of the pressure off. I agree with the pp who suggests contacting them repeatedly until they refer you. We got prioritised for our tt cut because the feeding specialist said she could tell how desperate I was to breastfeed. Good luck x

Vinoveritass · 19/11/2023 14:42

You need a lactation specialist, they privately cut tongue ties. See if there's anyone near you. We did this but it was too late really and eventually gave up after about 3 months of difficult feeding. I think if we had done it and then just focused on feeding it may have worked. I know women who stayed in bed for a few days just feeding on demand to get a good latch and then it was established and much better. I was very stressed and for some reason felt I had to be out and about with a successfully feeding baby straight away! So I was struggling with long feeds in cafes etc and it was just a nightmare

Original poster

jefl · 19/11/2023 14:49

QualityNeverGoesOutOfStyle · 19/11/2023 14:38

Yes, my son was exactly the same and didn't latch for 3 weeks until we got his tongue tie cut. The pumping was really difficult but made easier knowing that it was a means to an end, rather than thinking it would go on forever. I did top up with formula though to take some of the pressure off. I agree with the pp who suggests contacting them repeatedly until they refer you. We got prioritised for our tt cut because the feeding specialist said she could tell how desperate I was to breastfeed. Good luck x

Would you mind me asking how you got in touch with a feeding specialist? I've only seen midwives so far and they keep telling me they will chase it up and never getting back to me x

OP posts:

Original poster

jefl · 19/11/2023 14:52

Vinoveritass · 19/11/2023 14:42

You need a lactation specialist, they privately cut tongue ties. See if there's anyone near you. We did this but it was too late really and eventually gave up after about 3 months of difficult feeding. I think if we had done it and then just focused on feeding it may have worked. I know women who stayed in bed for a few days just feeding on demand to get a good latch and then it was established and much better. I was very stressed and for some reason felt I had to be out and about with a successfully feeding baby straight away! So I was struggling with long feeds in cafes etc and it was just a nightmare

I did find a lactation specialist and did have an appointment this evening - I found her CQC report and cancelled it as it was awful.

Unfortunately I can't find anyone any closer, and I don't want to drag my newborn 3 hours to Bristol.

I am so desperate to have it done and was so heartbroken to have to cancel the appointment.

OP posts:

olympicsrock · 19/11/2023 14:53

Both of mine had tongue ties, very painful latches, and partly formula fed . Both had tongue ties divided by a private lactation consultant and i then managed to feed until 9 months with DS 1 ( no longer interested) and DS2 14 months when I chose to stop.
If you continue pumping you will be able to Breast feed after the tie is snipped I think.

olympicsrock · 19/11/2023 14:54

They were a few weeks old when ties divided

olympicsrock · 19/11/2023 14:54

Where do you live?

Potentialscroogeincognito · 19/11/2023 14:55

I had similar, the breast feeding midwife was useless and kept chasing but nothing ever happened. Waited weeks and weeks. In the end we got a next day appointment privately to have DS tongue tie cut and then got on with breastfeeding. I topped up with formula but stopped once we got going with breastfeeding. Good luck!

QualityNeverGoesOutOfStyle · 19/11/2023 15:04

My son was in the NICU for a week where the tongue tie was diagnosed by the consultant and we saw the feeding specialist while we were still there. Call your midwife every day and ask for the status of your referral and ask your health visitor too. Could you post on your local FB group and see if anyone knows another lactation consultant?

horseymum · 19/11/2023 15:06

I know someone who is a special care dentist in a hospital and they do tongue ties, often at only a few days old.

edgeware · 19/11/2023 15:10

Look for an IBCLC lactation consultant, one that comes to your house. Get the tongue tie cut. Midwives and feeding team don’t cut it, you need the hands on help in the comfort of your own home. It will get sorted, honestly, but you need to chase these things however hard it is. Best of luck.

Original poster

jefl · 19/11/2023 15:46

olympicsrock · 19/11/2023 14:54

Where do you live?

We live in very rural Cornwall, the closest lactation consultant I could find was in Exeter (90 minutes away)

OP posts:

hanc66 · 19/11/2023 17:21

Hi! I know it probably won't change your mind but I went to the tongue tie specialist in Exeter a couple of weeks ago and had my LO's tongue tie snipped. Granted I hadn't read the CQC report before hand but just want to say I don't have any issue with the care/treatment we were given :)

Original poster

jefl · 19/11/2023 18:58

@hanhanc66 I really wish that I hadn't read the CQC report as every review I have seen is positive - unfortunately DH wouldn't let me take him after reading it. Did you hear of any other tongue tie practitioners in the area?

OP posts:

Bert2e · 19/11/2023 19:11

Have you looked on www.tongue-tie.org.uk?

HOME

http://www.tongue-tie.org.uk

Kittylala · 19/11/2023 19:14

What's more important? Your baby being fed or you breastfeeding?

Mamato29192 · 19/11/2023 19:16

Kittylala · 19/11/2023 19:14

What's more important? Your baby being fed or you breastfeeding?

She obviously wants to do it and that's fine. Plus it's still best to get the tongue tie sorted

Sandcastles24 · 19/11/2023 19:29

That is really rough. I was going to suggest the website above but you do seem be in rather an empty area for private practitioners. It only shows 2 people within a hundred miles. Could you get to one of these?
Has the nhs hospital actually said they have someone who can do it. If there are no private people in your area maybe there are no nhs ones either and you are waiting for a service they cant deliver. In my area lots of the nhs practitioners work private part time too so I would expect to see the same people in both settings

fyn · 19/11/2023 19:42

We used a nipple shield and then slowly weaned off of it when she was bigger! Still feeding now at 13 months. Exclusively pumped for a year with DD1 and didn’t want to repeat!

hanc66 · 19/11/2023 20:02

jefl · 19/11/2023 18:58

@hanhanc66 I really wish that I hadn't read the CQC report as every review I have seen is positive - unfortunately DH wouldn't let me take him after reading it. Did you hear of any other tongue tie practitioners in the area?

No sadly not, she's the only one from Cornwall up to Exeter I believe, I think she told us the next one is Tiverton? It's definitely a niche market! I'd only heard good things as well and would still recommend (but I appreciate your concerns from the report, I must admit I've only skim read it)

SleepyRich · 19/11/2023 20:05

It's just anecdotal, but my wife had problems breast feeding our last child, prev 2 had been fine. We were encouraged to get her tongue tie cut by nurse/midwives as it was quite noticeable and said it was the cause and they referred us in.

The surgeon we saw said the midwifery team were way out of date, and it would not change her feeding. People just think it works because most babies do pick it up and parents attribute it to the surgery. That he'd cut it if we really wanted since chance of harm was really low, but that it would make no difference to feeding since a tongue tie doesn't restrict sucking motion. If it didn't break naturally it might restrict playing certain instruments but in all likelihood it would naturally change by that time.

He recommended that if we just persisted likely baby will start feeding eventually, just supplement feed whilst she learns and doesnt lose any weight.

We got it cut anyway, which felt a bit daft going against the surgeons advice/unnessary surgery on someone so young. But my wife was exhausted and frustrated and we just wanted to try something. Whilst we never regretted it, I think the surgeon was right. She started feeding well by breast about 3 weeks later.

I say this as anecdotal as no doubt there will be just as many people saying that the day after surgery their child was able to feed...

Charlie2121 · 19/11/2023 20:10

I had the same issue and giving birth during covid the NHS support was almost non-existent. They told me that I would likely be waiting several months for the NHS to do it and that they would want proof that my baby wasn't feeding properly before doing it. To say I was displeased with this response is an understatement.

We went private and got an appointment with a lovely lady who operates out of a cottage in the Peak District. We had the tie cut at 10 days old and everything was fine. Feeding improved immediately and was never an issue again. I think we paid £200.

Mamato29192 · 19/11/2023 20:10

SleepyRich · 19/11/2023 20:05

It's just anecdotal, but my wife had problems breast feeding our last child, prev 2 had been fine. We were encouraged to get her tongue tie cut by nurse/midwives as it was quite noticeable and said it was the cause and they referred us in.

The surgeon we saw said the midwifery team were way out of date, and it would not change her feeding. People just think it works because most babies do pick it up and parents attribute it to the surgery. That he'd cut it if we really wanted since chance of harm was really low, but that it would make no difference to feeding since a tongue tie doesn't restrict sucking motion. If it didn't break naturally it might restrict playing certain instruments but in all likelihood it would naturally change by that time.

He recommended that if we just persisted likely baby will start feeding eventually, just supplement feed whilst she learns and doesnt lose any weight.

We got it cut anyway, which felt a bit daft going against the surgeons advice/unnessary surgery on someone so young. But my wife was exhausted and frustrated and we just wanted to try something. Whilst we never regretted it, I think the surgeon was right. She started feeding well by breast about 3 weeks later.

I say this as anecdotal as no doubt there will be just as many people saying that the day after surgery their child was able to feed...

My son could feed. It was just very painful for me but his latch did get better