Tongue tie regrowth after frenotomy

[mumming2024]

Hello,

I'd be so grateful to hear about any experiences of what to do when tongue ties grows back after it's snipped. I'm feeling really distraught for my baby.

(I'm also really mad as my local hospital's tongue tie clinic was rather relaxed about what wound management was needed afterwards and I think this is the reason for regrowth. But here for solutions...)

1. Was corrective surgery effective? I don't want o try again and makes it even worse.

1. I'm also worried about pain as I think there is now scar tissue. Apparently the scar tissue doesn't develop nerves until some weeks down the line. I really can't bear the thought of him going through significant pain.

In case some context is helpful: My baby had the procedure and 6 weeks and 2.5 weeks later his feeding is at an all time low. There is no longer any suction at the breast. I'm not sure he'd get any milk without my breast compressions. It's also transpired that he really was getting very little milk, only gained 400g in a month after last weighing around birth. The ineffective sucking has meant my milk supply is also low.

I've seen a private clinic where I saw a very experienced lactation consultation and consultant paediatric surgeon - they says it's healed badly due to the lack of after care / wound management advice given. So his tongue movement is now more restricted than pre frenotomy. They that corrective surgery is needed.

Thank you in advance.

Lactation consultant manipulated the tounge to break the tissue it happened a few times despite the aftercare my daughters kept sticking back down. I think perhaps I needed to be a bit rougher with the aftercare exercises but found it very difficult.

Thanks for replying. 🙏Maybe it was less healed that my baby’s then as LC didn’t suggest doing this. The NHS clinic after care was gentle pressure and if your baby cries too much, you can skip the exercises on the wound - the surgeon at the private clinic was adamant that firm pressure and diligent exercises on wound is needed. They also offer after care appts to check healing… I feel like this regrowth was avoidable. 😭😭😭

I am sorry to hear you are having a tough time. It’s really stressful. My baby had her tongue divided and it reattached. It’s since been divided again and after 3-4 weeks she is feeding a lot better. I was told to not expect too much improvement before 3-4 weeks.

When it was snipped again my baby was upset but settled after a proper feed and cuddle.

I was told that 5% of babies on average tongues reattach and it just happens, it’s just unlucky. This was by nhs tongue tie practitioner. I was not told to put pressure on wound at all. Just trace my finger along her gums and a few gentle exercises to get tongue strong and moving.

How is your local health visitor feeding team? I have found them super helpful and supportive. Can you call them for some advice?

My DS had this happen. It’d been snipped by a consultant and she redid it under anaesthetic as concerned about dealing with any possible bleeding. It was fine and went on to breastfeed till two.

Can you see if any Drs/Dentists in your area do laser procedure to release the tie? We had this done and had fewer issues post release than friends that had it snipped.

Thank you everyone for your messages and support. In the end we had it redone, choosing very careful who to go with.

After about a number of weeks of topping up with expressed milk (and some formula before too), via finger feeding, we have turned a corner with breastfeeding and looks like we won't need to supplement anymore.

We had my LO’s TT cut three times and it grew back even with the exercises. Wish we’d done laser as it’s less likely to grow back.

We had trouble weaning due to tight scar tissue so we had a video call with Faye at Rockabye and we sent in videos and she gave use tailored exercises to do that really helped my LO with tongue function. Also were recommended to do Cranial Osteopathy, I was sceptical about it but we did four sessions and with everything combined we turned a corner.

Hi there, do you mind share more details about about the second procedure. Was it done by laser or scissors? And what was the after care like?

My LO is 3 months old and we are experiencing the same thing (reattachment or scar tissue) after her frenulum has been at 1 month old. The lactation we saw has advised us to get it released again privately, although we haven't been to the private clinic yet, I am very very stressed about the aggressive after care. I am afraid it may cause feeding issues since we are doing expressed bottle feeding like feeding aversion and poor weight gain. So any information about the procedure would be really helpful to us!

Thank you

I’m so sorry you have gone through this, it’s all very stressful and emotional.

We did ours at the London Tongue Tie Clinic with paediatric consultant surgeon Mr Patel and lactation consultant Katherine Fisher. They set up the NHS tongue tie clinic at Kings Hospital in London so very experienced. They cut rather than laser, and put something in baby’s mouth to secure the tongue which is safer than just holding with fingers to do the cut (apparently not all private practitioners do this :-/ ). They advise the firm pressure after care, to keep tie diamond from the frenotomy stretched and diamond shaped (they explained it better than I can, that this follows general surgery after care principles - eg physio for knee after surgery). They say their recurrence rate is less than 1% and it happens when parents find the after care too hard to comply with. It was horrible esp the first week and then I noticed baby would stop crying as soon as my finger wasn’t in their mouth. So uncomfortable during but presumably not left with pain. This clinic also offered after care appointments, importantly the week after because any regrowth at this point can be disrupted with a finger (grim but better than a bigger intervention).

Sadly there is no proper research base re after care it seems, and maybe most babies don’t need the firm pressure but maybe in some cases - like
ours - it makes a difference. I hadn’t heard of the breast aversion risk until after from somebody. My baby is still feeding nearly 10 months later. I did a couple of weeks of expressing and formula top pre corrective frenotomy - and topping up via finger feed to strengthen baby’s mouth / be more like breast feeding. Our baby had dropped two centiles in weight. Then about 6 weeks of top up afterwards (of which maybe the first week only included some formula), continued to express after each feed and give expressed milk via finger feed. Maybe I could have stopped a bit before but was being v cautious. It was very exhausting and luckily I had the circumstances to do this. Eg if I had another child or elderly parent to look after I would have struggled even more as it was 24/7. If I had known that we would have this positive outcome I would have been less stressed but it felt so far away then. I was worried baby wouldn’t go back to breast as we had lost the latch and suck after the first frenotomy healed badly / regrowth but have recovered! I hope
this helps and give you hope.

Thank you so much for taking you time to respond, really appreciate it. So happy to hear you are still breastfeeding your LO, I am not sure if we will be able breastfeeding at all at this rate, since my daughter wasn't able to latch since the first release and we have been using the bottle for 3 months now. But it's all good, as long as we get her oral function resolved and she is growing happily.

Thanks again and wish you and the little one all the best.