Tongue tie/Lip tie support thread

[Emerald87]

Hi ladies.

I know a few awesome Mummies on here who worked through a tongue tie and have successfully gone onto EBF their LOs. I've also noticed quite a few new Mummies coming in and asking about tongue and lip ties.

There is a lot of controversy about how a tongue tie can affect BF'ing and even being in the healthcare industry myself, I have noticed little support for Mums dealing with this very real issue.

So I wanted to start a thread where we can all support each other and questions can be asked in regards to TT - from identification of one, to surgery, BF'ing and bottle feeding.

My personal story is long (you can have a full read in my signature), but in summary I have a LO who had a tongue tie so badly that her tongue was unable to move at all. This means that in utero she had a tongue that was anchored to her mouth. She was unable to move it at all before or after birth.
We had her anterior AND posterior tongue tie cut twice and did weeks of exercise. It took 3-4 weeks to get her onto the breast and almost 10 weeks for me to be comfortable with her EBF'ing and getting enough directly. I still pump 5-7 times a day and BF her about 5-6 times a day. She will have between 2-4 bottles of EBM a day as well. She also had a lip tie which was recently lasered.

Tongue ties are a real and important issue that affect BF'ing mothers far more than most people realise and give credit for.

Don't feel alone. You're not alone. And you CAN succeed in BF'ing!





EDIT

All about Tongue Ties

Tongue-tie is a condition that is caused by a short frenum (string of tissue) that restricts tongue movement. For example, some people have difficulty licking around their lips or raising the tongue tip inside the mouth. This can mean that they have difficulties with eating and speech. The medical name for tongue-tie is ankyloglossia.

Frenula are little strings of tissue found underneath the tongue, inside the cheeks, near the back molars and under the top lip. While an embryo is developing in the womb, these strings guide the growth of some mouth structures. Once we are born, the frenula are largely redundant, although they seem to help in positioning the baby teeth. The frenulum under the tongue is called the lingual frenum.

Symptoms of tongue-tie
> The symptoms of tongue-tie can include:
> Tongue can’t poke out past the lips
> Tongue tip can’t touch the roof of the mouth
> Tongue can’t be moved sideways to the corners of the mouth
> Tongue tip may look flat or square, instead of pointy when extended
> Tongue tip may look notched or heart-shaped
> A baby with tongue-tie may have difficulties breastfeeding or bottle-feeding
> The front teeth in the lower jaw may have a gap between them

Tongue-tie can be hard to diagnose in newborns – it is important to consult with your doctor, A maternal and child health nurse can help or a lactation consultant if you are having trouble breastfeeding. Signs that a baby could be tongue-tied include:
> Mother has sore nipples during and after breastfeeding
> Mother has squashed nipples after breastfeeding
> Mother has a white compression mark on the nipple after breastfeeding
> The baby has difficulty latching on to the nipple
> The baby often loses suction while feeding and sucks air
> The baby’s mouth makes a clicking sound while feeding
> The baby fails to gain weight

Where to get help
> Your doctor or paediatrician
> Maternal and child health nurse
> Lactation consultant
> Speech pathologist
> Your dentist or oral health professional
> Your public oral health service

What treatment is available?
The surgical procedure performed to cut the lingual or labial (tissue in the centre of the upper and lower lip) frenum is called frenectomy. The technique differs according to the age of the person and can include:
Babies less than 12 weeks old – the procedure may be done with local or topical anaesthesia, or occasionally using general anaesthesia. If using local or topical anaesthesia the area is numbed, the baby’s head is held firmly and the frenum is simply snipped (divided) with surgical scissors (or a laser). A number of studies report that breastfeeding is improved immediately after the procedure for some babies. Reports also suggest that tongue movement is normal within three months of the procedure.
Older children and adults – a general or local anaesthetic may be given beforehand. Stitches are needed when the tongue-tie has been surgically divided. It may take a few weeks for the mouth to heal. Self-care suggestions include rinsing with salt water, use of chlorhexidine mouth rinse and taking anti-inflammatory drugs such as paracetemol or ibuprofen. (Do not use aspirin in children under 14 years of age.) Older children and adults may need speech therapy after the surgery.

 

[Sproglet]

Here's mine and Robyn's story (might get a bit long!)

Before Robyn was born I was determined to EBF, to reduce her risk of inheriting certain conditions. I even went as far as to express colostrum prenatally and freeze it so if Robyn's blood sugar dropped after birth there would be no need to give formula.

When Robyn was born, she latched as soon as we were in recovery. The whole time in hospital, she would latch very well whenever the breast was offered. However, she never settled after a feed like the other babies, and after a while I noticed she wasn't swallowing much when at the breast. Midwives told me she was just very sleepy, and to strip her and tickle her to keep her feeding. She was passing the meconium so weren't too concerned. We were sent home after 2 nights.

The day after we were sent home (day 3), a different midwife came to check up on us. She was not nice, and was patronising when I explained about the difficulties we were having. By now, Robyn was no longer pooing, was jaundiced, and had lost 9% of her birthweight. I asked the midwife if Robyn's tongue was tied, and was told 'no, she's perfectly normal'. I was also told if I didn't get her to feed that day she would end up in hospital. Panicked, I hand expressed some milk and fed it to Robyn using a syringe. The midwife came back the next day, my boobs were totally engorged, the midwife 'helped' by forcing Robyn onto the breast. Robyn screamed and refused to try to latch any more.

My boobs were too engorged to hand express any more, so I went out and bought an electric pump. To cut a long story short, we ended up exclusively expressing and bottle feeding Robyn until day 15. The first few days, Robyn screamed every time I put her near my breast. Gradually,through lots of skin to skin and many tears, she began to accept being put in a nursing position, then I would express milk into her mouth, and finally on her due date she latched and fed off the left breast for the first time, after I tried nipple shields as a last resort (by the way, she can't feed using the shields because she can't open her mouth wide enough to take them in, but it seemed to flick a switch in her head that this is where milk comes from)

And boy, did it hurt! I gritted my teeth because at least she was feeding! And she was so noisy, clicking the whole way through a feed, she had bad gas, griping pains and green poo. we ended up giving her Infacol which helped a little but not much.

It took another week before she would latch on the right. Even then, she would misshape my nipple so bad. This whole time, I was seeing breastfeeding support workers, I had seen every midwife available, been to breastfeeding groups. And done lots of research on the Internet. And everything came back to tongue tie. Thanks to Catherine Watson Genna, I knew that Robyn had some signs. Then I spotted Robyn's lip- it just will not lift. I took photos and sent them to various lactation consultants and private tie dividers with a brief history, and they all agreed that she was lip tied.

I made an appointment to see my GP when Robyn was 5 weeks old, I explained how much breastfeeding hurt, told him about Robyn's tummy troubles and showed him her lip and tongue. He said that if breastfeeding hurt, don't do it. Robyn's tummy troubles were unrelated. And it's very rare for tongue or lip tie to cause problems feeding. I left the appointment in tears, with a prescription for thrush cream! At this point, I had to stop feeding from the right and expressed and bottle fed those feeds.

Next, I showed the health visitor and breastfeeding support worker at Robyn's 6 week check. Thankfully, they believed me! And gave me the details of the local NHS tongue tie divider. I went to Robyn's 6-8 week GP check, luckily her GP is lovely, and he put the referral in straight away.

At 8 weeks old, we went to see the surgeon who confirmed that Robyn did indeed have tongue and lip tie, but that they didn't need dividing! They gave me some useless advice (you need to obtain a deeper latch) and sent me away. In tears again.

Fortunately, when doing the assessment, the surgeon pulled Robyn's tongue around quite a bit. This seems to have stretched the tie as her tongue has been freer since then, and I was able to gradually restart feeds on the right.

Finally, at 12 weeks old, we have been able to move to exclusive breastfeeding- no EBM top ups or pumping sessions! As she's grown, she had clicked less and maintained a deeper latch for longer periods of time. And Robyn's tummy is much better now that she is feeding better.

The health visitor phoned to see how I was doing the other day, and asked about the tongue tie appointment. She was amazed to hear that Robyn did have tongue tie, she said she couldn't see anything wrong herself, but it seemed important to me so she went along with it. And thank goodness she did, she was the first person to believe what I was saying- even OH thought there was nothing wrong because that first horrible midwife said so!

The moral of the story is- trust your instincts! If you know that something is not right with feeding, stick to your guns and keep asking different people for help, eventually you will get there!

UPDATE: Robyn is now 6 months, we made it to 6 months exclusively breastfeeding. The second half of that time breastfeeding has been more or less trouble free. Robyn still lipsticks my nipple and makes it sore (especially if I'm particularly full) but other than that we've been fine.

At 6 months we introduced solids. She struggles with getting food stuck on the roof of her mouth, haven't noticed any other difficulties. However, since introducing solids her tongue is much looser than it was! She can stick her tongue out past her bottom lip, which is much further than she could before. I thought I was imagining it, but the volunteer at my breastfeeding support group noticed it too. So I guess the consultant was right when he said she'd grow out of it. (I'd still say she's tongue tied, but its's much milder now )

 

[babyjo]

Think it's a great idea to start this thread. Wish it was there in the beginning for me. My LO is now 9 weeks. Finally happy breastfeeding. Never thought it would happen
My quick story is-
LO's tongue tie cut me so bad breastfeeding I had to use nipple shields first two weeks to get by;
Big weight drop and very slow weight gain;
Tongue tie cut at 2 weeks, ditched nipple shields day before procedure;
Because of nipple shields and badly cut nipples I had nipple thrush which was the worst pain I've ever experienced.
I couldn't express a lot so couldn't be an express feed mum which i really wanted.
LO had poor latch because of all that we had been through so i've had mastitis, milk blister and plugged ducts.

Now LO is 9 weeks and I am sooooo glad that we are EBF in relative comfort. LO weight gain has sky rocketed and is now back where it should be.

My wish is that LO tongue tie got cut as soon as it was noticed to be severe as it could have prevented all the other stuff. Please look at your baby's mouths yourself to see if there could be a tongue tie.... Google images; my midwives, paediatrician and health visitor missed it in hospital!!!Be vocal and ask them to check for you especially if you are having breastfeeding problems.
Through the tears, and pain I'm sooooo glad I stuck with breastfeeding.
Good luck to you all x

 

[Emerald87]

Some pics of TT to help identify

 

[urchin]

Good idea Emerald.

Here's our story.
Aoife spent her first 3 days in ICU as they thought she had a nasal atresion, though it turned out she didn't. She started out on just a drip, but as soon as I started to try and feed her I knew something was wrong.
When she fed she didn't feel like she was sucking, more chomping with her hard bony gums. Over the next 5 weeks I explained the problem to various nurses, midwives, health visitors and BF advisors and they all said I just needed to work on her latch and positioning and the pain would pass. It didn't.

At 4 weeks I saw a LC who was the first person to put her finger in Aoife's mouth to see what she was doing - and found that she was retracting her tongue, rather than sticking it over her lower gums, and so was indeed chomping my nipples - just as I said she was. I nearly cried that someone was finally validating what I was saying.
The LC gave us some tongue exercises (I'll post them for everyone else).

I did the exercises for a week and went back, and although they helped, they did not cure the problem. The LC had another look and diagnosed a posterior tie and referred us to get it assessed.

I carried on with the exercises and 3 weeks later we had the tt divided. The consultant said it was a slight posterior tie, but did it anyway as it was affecting feeding.

Up until this point I had been expressing most of Aoife's feeds and just putting her to the breast once or twice a day to keep her hand in. As well as hurting me when she fed, Aoife was also getting frustrated after the initial 'easy milk' at let down, and wouldn't feed long enough to drain a breast, At some point during all of this my supply crashed and I ended up on Domperidone (which is working very well for me)

It took 2 weeks post snip for Aoife to get the hang of using her tongue differently, but now I can honestly say that feeds are now pretty much painless and I actually enjoy feeding her now...and this is something I thought I'd never say: I spent the first 8 weeks of her life dreading each feed, and tied to the house pumping for hours on end.

Getting the tt snipped and having Domperidone, are the 2 things that have saved my BF relationship with my daughter - I had honestly got to the point where I couldn't see me carrying on. I'm just glad that I am so stubborn, because really, that is what kept me going.

So, that's me - a difficult journey but we have finally emerged into the sunshine

 

[urchin]

Tongue Exercises

You need clean hands and short nails!

Warm up
Put your index finger in baby's mouth and run it from side to side on the outside of the gums
Start in the centre and run it to the outside and back
Baby should follow your finger with their tongue
This helps to loosen it up and get them used to moving it around more

Exercises
Mix and match these, do whichever work for your baby
Try it before feeding, or before swapping boobies
Stop when baby gets fed up

Press-down exercise
When baby opens their mouth press down briefly on the humped area of their tongue, then immediately pull your finger out
Make silly noises when you do it to make it predictable and fun e.g. nose (bip) lip (blop) tongue (boop)
This helps baby to drop their posterior tongue when they open their mouth


Tongue massage
Draw small circles with the pad of the finger just behind the tip of the tongue
If/when baby starts to duck, turn the finger over and carry on with the circles using the nail side
This helps baby to extend their tongue

Walking back
Press down firmly on the tip of baby's tongue and hold for 3
Release but keep your finger in their mouth
Repeat a little further back, then a little further back
Stop before they gag (if they do remember how far back you were for next time)

Pushing tongue down and out
Put finger in babies mouth nail side down
Press gently for about 30 secs while baby sucks it
Turn the finger over slowly so it is now pad down
Keep pressing and gradually pull your finger out

The Charm
Do this one last, just before you feed the baby
(it's called The Charm because it works like one!)

Lay baby across your lap face down with hips bent
Support the baby's forehead with the heel of your hand and put the index finger (of the same hand) into their mouth, nail side on their tongue
Let baby suck until their tongue loosens and comes forward
Gently turn baby over and latch them on

 

[urchin]

this pic has a photo of a posterior tie - not so easy to spot as the more obvios ones

https://www.mommypotamus.com/wp-content/uploads/2012/01/how-to-diagnose-tongue-and-lip-ties-3.png


Here's how to check for a posterior tongue tie

https://www.youtube.com/watch?v=5opSbXvL7yQ

 

[Sproglet]

Also this site:
https://www.cwgenna.com/quickhelp.html
Has pictures of different things that are clues to a posterior tie.

And the UNICEF baby friendly website has lists of uk tongue tie specialists
https://www.unicef.org.uk/BabyFrien...ie/Locations-where-tongue-tie-can-be-divided/

 

[Monalissa]

Great idea! Thank you for the tongue exercises, urchin.

Olivia had no issues latching on right away. Even the LC at the hospital laughed because Olivia latched herself on while she was trying to show me the correct way. I noticed her lip tie the morning after she was born and was told by the LC it was normal and that we all have that piece of skin. I don't know if she was clueless or if she didn't look closely enough to see that it was attached to her gum line. She also said that her latch was good even though my nipples came out with crease down the middle which later turned raw and scabby. Ouch!

The second night in the hospital was horrible. Olivia was inconsolable and on my breast all night long. She was slightly jaundiced and not having wet diapers so I was encouraged to nurse first and then top off with a small amount of formula. The nurse gave her less than 10 mls and for the first time in hours she was settled and comfortable. I cried because I felt so horrible.

We continued with my husband giving small top ups of formula via a syringe after I nursed until day 4 when my milk started coming in and she refused it! She also started having wet diapers. At her 2 week check-up she was a half ounce from being back to her birth weight and continued to gain 5 oz every week.

Around 3 weeks she started getting really gassy and was having these "episodes" while nursing - she'd cry, latch on and off, kick her legs and claw at my breast. We attributed it to the gas. Around week 4 I tried expressing with a hand pump and got nothing. Her frantic nursing episodes were also getting more frequent. She would also cry constantly, always seemed hungry and would never settle right.

The following week when she was 5 weeks, I had an LC come in for some guidance with pumping. It was then I found out about my low supply. She confirmed her lip tie and a possible posterior tongue tie. She also said her chin/jaw was more recessed than usual which would also contribute to her removing milk inefficiently. She was certain I could increase my supply with pumping 8x daily.

After not seeing any improvement a week later, I met with another LC for a second opinion when Olivia was 6 weeks. She felt I should really consider a consult with a well known Pedatric ENT in the area. Her observation was that Olivia would pull out what she could quickly and then get tired, probably because the ties were making it harder for her to nurse.


At 7 weeks we met with the doctor and got both clipped. I was soooo scared as some of you remember and I must say her recovery was completely uneventful. She didn't even cry until they put gauze in her mouth. The only difference I noticed in her nursing was that her lips would turn out more consistently like they should. It wasn't a magic cure for us at all. I haven't had pain since she was about 10 days old so it never made a difference for me in that respect. During this time I also started domperidone, fenugreek and blessed thistle. I made sure to get those pumps in also.

At week 8 we brought Olivia for cranio therapy. Again, no noticeable difference immediately after her session. Last week I decided to meet with a well known and respected breastfeeding doctor that both LC's recommended. Along with the ties, she felt her recessed chin plays a big role in her nursing difficulties, and is why my supply dropped. The only reason it didn't completely tank is because i fed her so much. Her jaw should start to come forward more in the next 4-6 weeks.

The doctor sees no reason why I can't produce enough milk for Olivia. My breasts are a little far apart but they are not hypoplastic. I've also started Goat's rue and have been drinking Mother's milk tea while continuing with the domperidone and fenugreek. She explained that the domperidone increases supply by 10 ml per feed, per week. By 3 weeks it would be 1 ounce more per feed. I have to say improvement has been really slow for me, but we are finally having some good feeds and Olivia is getting better at nursing too. We hardly ever have the frantic nursing sessions anymore although most feeds are followed up with a small top up via bottle.

I'm hopeful that we will have a long nursing relationship and will be back to EBF in the next couple of months. I still have a lot of guilt that all that time I just thought she was this cranky little baby, she was actually hungry because she wasn't getting enough milk. I'll never get over that feeling.

 

[kitabird]

Does this look like it should? I can't tell and am desperately trying to find the cause of our problems.

 

[Emerald87]

Looks like an anterior TT to me. But a posterior TT would need to be identified mostly by feel.

 

[Purplelila]

Does this look like it should? I can't tell and am desperately trying to find the cause of our problems.

Im not sure tbh

If its a posteriour tongue tie you cant really tell just by looking.which is why my dds tt got missed by so many health care professionals. Someone needs to have a feel under the tongue and if like a speedbump or more then it could indicate a tongue tie.

What other symptoms do you have?

Has anyone checked your lo?

 

[Monalissa]

I also think it looks like it could be an anterior tongue tie. I've read of some babies having both anterior and posterior.

Silly question ladies - I have a piece of skin under my tongue towards the base. So does my OH (and friends that I asked). Isn't that normal to a certain extent?

 

[Purplelila]

Does this look like it should? I can't tell and am desperately trying to find the cause of our problems.

If its a posteriour tongue tie you cant really tell just by looking.which is why my dds tt got missed by so many health care professionals. Someone needs to have a feel under the tongue and if like a speedbump or more then it could indicate a tongue tie.

What other symptoms do you have?

Has anyone checked your lo?

 

[kitabird]

Does this look like it should? I can't tell and am desperately trying to find the cause of our problems.

Im not sure tbh

If its a posteriour tongue tie you cant really tell just by looking.which is why my dds tt got missed by so many health care professionals. Someone needs to have a feel under the tongue and if like a speedbump or more then it could indicate a tongue tie.

What other symptoms do you have?

Has anyone checked your lo?

I have painful and mishapen nipples but have been told he looks to be latched on fine. LO takes in a lot of air and makes a lot of noise when feeding. I've also tried a bottle and most of the milk comes out at the sides of his mouth. All the health visitor has done is ask me if he can stick out his tongue, which he can, but that doesn't exclude tongue tie altogether. I don't know who else could check?

Also his tongue often has a heart shaped end.

 

[Sproglet]

Quick way to check: run your finger under LO's tongue left to right and back. A 'speedbump' could mean a problem, a 'fence' is definitely a problem.

How high does LO's tongue lift? As this is usually the problem with posterior ties, rather than sticking the tongue out.

And in the photo, your LO's upper gum looks like Robyn's, can you lift their lip and check for a tie there?

 

[urchin]

It certainly looks like it could be a tie to me... does your LO make clicking noises when feeding too?

 

[kitabird]

Quick way to check: run your finger under LO's tongue left to right and back. A 'speedbump' could mean a problem, a 'fence' is definitely a problem.

How high does LO's tongue lift? As this is usually the problem with posterior ties, rather than sticking the tongue out.

And in the photo, your LO's upper gum looks like Robyn's, can you lift their lip and check for a tie there?

LO is getting fed up with me poking around his mouth and has clamped it shut! I've had a look at his lip and the frenulum is definitely attached low down, but I'm not sure it's severe enough to cause a problem. I think he has slight tongue tie too, so those combined could be why it's so painful for me. I'll ring the health visitor in the morning and ask if she can have a proper look or refer me to someone who knows more about it.

 

[kitabird]

Well the health visitor has had a look and agrees that there could be an issue with lip tie, but she doesn't know anything about it. Going to be referred to a paediatrician who deals with ties, but as there's only one for the whole region there could be quite a wait. Hopefully I'll still be breastfeeding by the time we hear back!

 

[Emerald87]

Bump for the new ladies