Posterior Tongue Tie ? Not anterior!

[Mumat34]

Hello,

First time mum, 34 years old.
Wondering whether I did something wrong in pregnancy that’s created this issue with my baby 😭

She struggled to match with breastfeeding, went to a feeding clinic, nurse diagnosed her with a posterior tongue tie. (So it’s at the back of her mouth, her tongue doesn’t come to the roof of her mouth to swallow. She can get her tongue completely out of her mouth (sticking out) just can’t lift it up at the back.)
Nurse said not to treat it unless it affects her speech later on.

She’s now 6 months old, and for the last 3 months coughs and sometimes chokes on her bottles. She doesn’t cough on every bottle, but the majority. She then shows signs of aspiration after, you can hear her rattling in her throat and she makes a noise to clear this.

I rang HV ages ago, seen my doctor, and have been waiting for a referral to an E, N, T specialist.

I haven’t started solids because i’m scared of her choking.

This week I had a zoom call with a specialist, who wants to see her in 2 weeks to check her breathing and her swallowing.

To add my baby also sucks her thumb, but doesn’t close her mouth around it. She sticks the thumb in the roof of her mouth, and has her mouth open, she then ripples her tongue underneath. (Google night nursing tongue/breastfeeding tongue - that’s exactly what she does.)
She would not take a dummy.

She is 26 weeks old today. The doctor seemed concerned that baby doesn’t roll all the way over yet. She goes onto her front then back onto her back, but goes back the same way she went up, so not all the way over.
She was also concerned that baby can sit up but leans forward and not upright. So we prop her the majority of the time.
Like there’s something wrong with her development.

Have I caused these issues?

Has anyone else got a child with a posterior tongue tie?

Oh my goodness, OP. I can't help but think you're having some pretty rubbish 'advice' here. Your baby is about 6 months and sounds like she is pretty well on track to me. All my babies were sitting up but slightly forward at 6 months, with help being propped up. By 7 months they were all able to sit straight backed and without help. They all got much better at rolling more consistently between 6 and 7 months too. I'm not sure why on earth the doctor would be concerned about that. I work with mothers and babies and they all develop at their own pace. It depends on so many factors, how much tummy time they get etc etc.

As for the tongue tie, they are very common. Posterior ties are harder to diagnose and not so well understood as anterior ones. The nurse was wrong to tell you to leave it untreated if it was bad enough to be affecting breastfeeding. I had my baby's posterior tie divided at 1 week old and we were able to resume breastfeeding. It would have been impossible for us without that. I think you need to get another opinion about it now, preferably from a lactation consultant or a midwife experienced in these matters. I understand your baby is bottle feeding now, but lactation consultants have the most experience with TTs. It would be wise to get it investigated in case it is still causing a problem.

And no, you have certainly not done anything to cause any issues! I have read a theory that taking folic acid during pregnancy may possibly be a cause of a higher number of TTs these days. But almost everyone takes folic acid supplements during pregnancy! It's just a theory anyway.

My youngest is the same age (I think, he’s 6.5 months, stopped counting in weeks some time ago) and has a posterior tongue tie. The paediatrician spotted it during his newborn check. I didn’t try to BF him but he manages fine on bottles. We’ve started weaning which he’s loving- mix of purées and finger foods. Obviously I can’t say what problems we might have had with nursing but with FF you’d never know he has the tongue tie. He’s been rolling for ages, is really trying to crawl, but hasn’t quite cracked sitting yet and as you describe tends to lean forward which my eldest also did at his age so I’m not worried. You won’t have done anything to cause a tongue tie, they’re so common. Also chat to your HV if you’re worried but don’t delay weaning unless specifically medically advised to- babies are born with iron stores that last about 6 months so they need to start getting iron from their diet.

I echo what a pp said. I don't think you have issues relating to rolling or sitting, that seems super normal to me and my little boy was the same. I think you may have had some poor advice regarding the TT and I would see if you can get a lactation consultant to have a look as they are the experts. There is some evidence suggesting that taking folic acid in pregnancy can increase the chance of a TT. However the benefits of taking folic acid by far outweigh the risk of a tongue tie so its always still recommended to take. In regards to your little ones feeding/choking, she could have something called Laryngomalacia. Essentially a slightly floppy airway. Its pretty common that they usually just grow out of as they grow...most of the time gone by 12 months. I along with my GP thinks my little one has it as she does choke on milk frequently, noisy breathing etc. We aren't doing anything anything it apart from trying to make sure she gets a good latch when she feeds.

My son had posterior tongue tie and while I battled through the breastfeeding, we decided to get it operated on anyway as they said he may not be able to do things like lick an ice-cream normally, which just seemed such a basic thing! The window of opportunity is something like before 6 months and then after one year. We had it diagnosed late, so it had to be at the one year mark. It can't be done in later childhood as it is too thick by then. He was in and out in a day although put under general for it. It was a bit traumatic at the time, but went without complications and that way you know it won't cause speech or other complications. I'm glad we went ahead and sorted it, because the complications only come when you can't actually operate anymore.

Ah and by the way it has definitely worked because age nine and he can touch his nose with his tongue!!

Hi,

Hope you don’t mind me responding to you.

We’ve seen a Ear, Nose and Throat specialist today. She has said my daughters muscles in her face are too tight and I need to massage her face 5 times a day to loosen them. She still insists she’s behind in her progression as whilst she can sit up leaning slightly forward she cannot get to the sitting position without help. And apparently should be able to not only sit up but sit herself up now. She’s 28 weeks tomorrow.

She has confirmed a posterior tongue tie and also said she has a high arch which apparently the massage will help with?
She’s going to ring me back in 2 weeks for an update.

In the mean time she’s had a tooth break through, started baby rice and fruit purées which she’s enjoying and hasn’t choked or coughed on any of them - it’s just her milk.

Feeling like a bit of a failure here in regards to her sitting up on her own. She spends so much time on her tummy as she constantly rolls onto it.

Hi @Mumat34
Whilst I don’t have experience with tongue ties, just thought that I would reply about sitting up!
My little boy was definitely not sitting up on his own at 28 weeks, he’s only just started that in the past 2 weeks and he is 9 months next week. Not sure why they are fixated on that 🙈 be prepared for a lovely sleep regression when that skill hits too!
They really are all so different, my friends little one is a full month younger and he has done all big skills ahead of my son. Rolling, sitting, crawling, pulling up. Whereas fine motor skills wise my little one is miles ahead, so try not to worry!
Glad the weaning is going well x