Baby with tongue tie - any experiences?

[Sparkeleigh]

My baby has been diagnosed with a tongue tie. He wouldn't bf at all on hospital unless the midwives squished my boob and shoved him into it and they were concerned about him not feeding so eventually I gave him formula to get home.

Since then my milk has come in and I've been expressing. I saw a Lll leader yesterday who diagnosed tongue tie, and said clipping it could improve how he feeds.

Does anyone have experience with a baby with tongue tie and did you get it clipped?

My DH feels that if it's just to make our lives easier and get more sleep it's a bit selfish to put him through it. He's been feeding and changing DS at night while I express but I'm worried at how practical this will be when his paternity leave is over.

I don't know what to do, it seems easier to do it now when he's only a week old than later and I'd really like to breastfeed him, even if that is a bit selfish. I've tried nipple shields and he seems to be able to feed through those but they're so fiddly and need constantly sterilised they're not practical for all feeds.

Thanks to anyone who read that essay!

[GTbaby]

Spark. I wanted to add that I only wash nipple sheild with hot water and soap. Between feeds and stick pin steriliser when switching it on.

Big yes to getting it snipped.
Did not get ds1, as I ended up ff before realising he was TT. N then gp said to leave it. Really hoping he doesn't have speech issue n end up having to cut it later.

Ds2 I was alot more aware n noticed it sooner got it cut at 5days old. Didn't even cry. Tbh. It's the best thing to do.

[Standingonlego]

spakeleigh - up thread you mention baby is very windy. my TT DS suffered too, his inefficent latch due to the TT meant he took a lot of air as a poor "seal" when feeding. we used infacol to help, once TT divided it did get better :)

Lots of good advice on people to contact to help on this thread - where roughly in the country are you. I am a huge fan of Southampton - but i am a bit biased as he is the expert and had done 10,000 plus.

www.nhs.uk/conditions/tongue-tie/documents/tonguetie-mrgriffithsthoughtson(patientinformation).pdf

get thee to an expert, make that phone call tomorrow morning

[mawbroon]

Article from Dr Kotlow which mentions aerophagia which is the swallowing of air.

DS1 used to get a distended stomach like the one in the picture.

[Sparkeleigh]

mawbroom & standingonlego Thanks for those links, he did have a little swollen belly yesterday after I used the shields all day, it was awful, though thankfully not as bad as in that article.

I'm in N.Ireland, I've got some recommendations for dentists who will do the clip but I'd rather go through the hospital when he was born at the minute, though if anyone has any experience of getting it done in N.I, I'd love to hear it.

[Somersaults]

DDs tongue tie was spotted by our midwife within a couple of hours being born and she was two days old when it was snipped. I'd do it again in a heartbeat. I agree with the previous poster that it should be routinely looked for in newborns and treated ASAP. I don't remember DD bleeding at all (this doesn't mean she didn't, but if she did it wasn't enough for me to remember it so can't have been that much!). They did it in my room at the hospital with me there and she was more bothered about her arms being swaddled than the actual snip. She fed again immediately with a much improved latch.

[Thumbwitch]

Sparkeleigh - the windiness is more than likely linked to the TT and inefficient latch, yes. DS2 sucked in terrible amounts of air with every feed - he fed like a demon but would then spit back a lot of it, sometimes what appeared to be the whole feed. Throwing it back up never bothered him, it was like silent reflux, but it was heartbreaking to see all that milk being chucked back up, especially as it had hurt so much getting it down him! And it meant he'd be hungry again that much sooner, so I'd have to go through it all again sooner. Of course the more air they suck in, the more chance there is that they will get trapped wind as well, and DS2 used to writhe in apparent agonies with it - massaging his tummy helped but it did get quite distended sometimes.

The TT snip at 5w did cause improvement, but not immediate - the refluxing of his feeds took a while to settle down, as he had to re-learn how to feed and it took a while. The earlier you can get this done, the better. Hope your appt comes through very quickly. :)

[Lasvegas]

I was born with one and it was not noticed until I was around 10 years. It caused speech problems and I had it removed when i was about 10 yrs old under a general day case nd time off school. Had to go to speech therapy which afected confidence and more time off school. If it happened to my dd I would definitely haveitsippedasap

[mawbroon]

Lasvegas, sorry to hear about your experience, I can imagine how it can lead to a lack of confidence.

If anyone is interested in reading more about this, Tongue Tie by Alison Hazelbaker is very interesting. She had her tongue tie revised as an adult so is able to give personal experience as well as professional. She is a lactation consultant and her book is aimed at everyone from the parent who knows nothing about tongue tie to HCPs who wish to learn more.

General anaesthetic has been mentioned a few times on this thread. With laser revision, there is no GA needed, just some local anaesthetic. Having the patient awake allowed the tongue to be assessed as the procedure is carried out which is not possible while the patient is under GA.

to demonstrate how laser revision is carried out.

[NutellaWithaSpoon]

My 3rd son was born with a Tongue Tie. I noticed he had a dip in his tounge making it look a bit snake like and I mentioned it to the paediatrician. She lifted his tongue and said oh yes he's tougue tied and that was the end of the conversation! Not having any experience in this field I mentioned it to my Midwife and HV. They both showed some concerns however as he was BF really well they said it was best to leave it. He is now 2 1/2 and I have mentioned it time and time again. I really think it should have been cut at birth. He could feed however as my older boys both had speach therapy I felt it very likely he would have to have it too and the added tounge tie may not help. The tie is now very noticeable as it seems to have some white scar tissue on it now where perhaps it has been damaged over time. His speach has been delayed (kind of expected that with his brothers history) however I feel he is really is struggling sometimes. All the professionals I spoke to wouldn't even consider cutting it as he could feed. I live in Suffolk and unless I had taken him privately to Norwich for a £150 fee (it wasn't the money, it the doubt at the time it was the right thing to do) there was nothing I could do. He's now entering into Speach Therapy. He's bright and happy but the prediction by HV that it would self tear has well and truly passed and I feel like a bad mother for not having dealt with it.
Without a doubt if you are having to express and bottle feed just to get him to eat then it needs to be cut. Nursing your own baby is such a joyous experience I would hate for you to miss out on it. If you continue to express to give him the best start I fear it will make you tired and stressed at having to keep up a constant supply, not to mention all the steralising you must be doing. Get it cut and with luck you will manage to feed him yourself, and I promise you it's not selfish. Good luck!

[MistressDeeCee]

Both my DP and his sis had tongue tie as babies and yes, they were clipped. My DP is glad his parents made sure this was done early..less chance of speech problems etc

[mawbroon]

Nutella, it is not too late to have your ds's tie dealt with.

Malcolm Levinkind in East Finchley revises tongues and lips with laser, no GA needed.


In fact, it's never too late to have ties dealt with IMO

[lookout]

I waited 5 weeks for a referral to our hospital where the general surgeon clipped it. He didn't get it all and after a further 10 days of agonising pain I finally got it done properly by a private lactation consultant, £80. 6 and a half weeks of absolute agony because I waited for the NHS when I could have done it privately straight away. I was swayed by the hospital thing, thinking it would be safer, easier, better somehow. I was wrong. I know they're not all like that, but it is better to go on a recommendation if you can rather than just blindly trust the hospital.

[ElsieMc]

My GS who lives with me had a tongue tie. Attitudes appear to differ from area to area and where we live, they are very reluctant to snip a tongue tie, preferring to send him to a speech therapist. She would not even recommend a procedure so I asked to be referred to a specialist. He told us the tie was severe and recommended it was cut. My GS had to go into hospital and undergo the procedure under a general anaesthetic. On the ward was a little girl who had failed to thrive due to eating problems. She had a severe tongue tie.

Simple things like him not even being able to enjoy an ice-cream stick in my mind.

My GS had poor speech and although snipping the tongue tie can resolve the problem, by then children have learnt to speak in this particular way and I still feel his speech is a bit "muddy". I do recommend others get this done so much earlier.

[minipie]

I am yet another who would urge you to get it cut, as early as possible.

My DD had a posterior tongue tie, cut at 16 weeks. before it was cut she was very windy and uncomfortable and clearly found BF really difficult (in fact she also struggled with bottles - so bottle feeding isn't necessarily a "solution" to tongue tie). afterwards, feeding was completely different and she was a much happier and more relaxed baby in general.

IME the effects of a posterior tongue tie get worse rather than better as the baby gets older - so although you may find feeding just about ok at the moment, it could get worse if the TT is left unsnipped.

The cut was over in seconds and yes she cried but only for 30 seconds max.

Any future children I will have checked for TT straight after birth and snipped ASAP if they do have it.

Where are you based? I can recommend someone in SW London/surrey area.

[minipie]

Sorry just saw you are in NI.

[TwinkleSparkleBling]

Just been reading this with interest as DD2 was diagnosed with TT at birth. I was told not to worry about it unless it gave us problems feeding. She dropped 13% of birth weight and were re admitted to hospital. I feel really stupid now that I didn't bring this up as a possible reason.

Anyway I'm now wondering if it's possible DD1 may have undiagnosed TT. Is it more likely in siblings?

I've been getting increasingly worried about her speech. At nearly 3 she talks as though she has something in her mouth iyswim. Could this be down to TT? (we did have trouble for the first 6 weeks of b/f). Who would I ask?

[nextphase]

Twinkle, yes, there is a genetic component - both mine were tied.
Sorry, can't answer the rest of your questions tho.

[GTbaby]

Twinkle go see your gp. Look on google images to see what a TT looks like and check out her tongue yourself. It may be obvious.

[minipie]

TT runs in families Twinkle so it's possible she does.

please don't feel stupid - TT is notoriously under diagnosed and/or under treated

I'm not sure who would be best to ask about your dd1 - I would say ask your GP but they tend not to know much about the effects of TT beyond breastfeeding. mawbroon might have some ideas if she sees this.

[mawbroon]

Where are you based?

TT is highly hereditary. Both mine have it, but DS2's has not caused anything like the problems that ds1's has.

They got it from DH!!!

[surgicalwidow]

Do it ASAP. The procedure is totally fine - 30 secs in my experience. Honestly, as someone who struggled with a miserable, screamy baby for 8 weeks until a lactation consultant picked it up, you're lucky it has been diagnosed early and should act on it.

So heartened to see how this thread has taken off - midwives and GPs take note!

[lookout]

Twinkle find the facebook Tongue Tie group. They are so helpful and supportive and will be able to help you without any doubt. Otherwise you can try a dentist or GP, but seriously, my first port of call would be the fb group. There are qualified LCs on there who can look at photos that you post and tell you their opinions on the tie.

[lookout]

Here you are

[perfectstorm]

My DH had such a bad tt he was fed via a spoon from birth. Couldn't latch on a bottle. Had terrible orthodontic problems, and actually nasal problems as well that required operating. So yes, hereditary and why I am so anxious the new baby is checked by someone who knows their arse from their elbow as soon as possible after birth.