Tongue Tie (shared experiences from mums)

We had a topic on our Facebook page, asking families who had experienced tongue tie with their baby to share their comments and support for other mums.  There were many comments on the page, seems that tongue tie is much more common.  Perhaps the moral of the story is Trust Your Instinct.  if you think something is not right with feeding, get someone to check for Tongue Tie

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Getting it cut doesn’t hurt.  My baby slept right through it and didn’t even budge. He lost a lot of weight before it was cut but is gaining weight now

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My son was tongue tied, he wouldn’t latch for feeding & was losing weight fast because of it, he didn’t really like using the nipple shields, at 2 weeks old I had it cut, it was the BEST thing I’ve every done, definitely recommending getting it done, we have been breastfeeding for 2 years 7 months.

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My third had this, I didn’t even realise as it made no difference whatsoever to his feeding, my midwife just noticed it. Took him to a specialist doctor and it was a little weeny snip, he slept through it! Apparently the nerves are yet to form so it doesn’t hurt them.

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Little monster was born with severe anterior, posterior and upper lip ties (couldn’t suck and had to have nasal gastric tube). Support in hospital was terrible and had to go private (twice) to get revisions. In the end it cost us the first 5 weeks of our breast feeding relationship and I ended up pumping exclusively instead. My advice for mommies would be, get them confirmed and addressed early and work with a lactation consultant. Keep doing skin to skin and pump if your newborn can’t latch right away- that way when they are all better and can latch, your milk is still there.

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Son #1 (now 3 1/2) had major problems breastfeeding him – he’s grown out of it. Son #2 (now 15 months) got picked up early due to issues breastfeeding him, and had laser surgery at 2 weeks old to release the tongue and upper frenum. He’s all good now. My advice, if you think there is an issue, persist until someone helps you. We had so many problems with #1 because no one would listen, which later caused major issues with eating and speech. We knew what to look out for with #2 which is why he was sorted so quickly.

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My little boy has a tongue and lip tie. We are off to see the oral surgeon next week and hoping to have it lazered. The professional support we have received hasn’t been the best, which has left us very confused and wondering who to go to get it fixed

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My little boy had a tongue tie, wasn’t latching properly and ended up back in NICU due to severe dehydration from not feeding. Trashed my nipples which didn’t recover so he ended up on bottle. They snipped the tongue tie in NICU but not enough, so we went to Old Villa Dental in Hamilton who lazered it, so quick and a lot less painful than the snipping. He was good as gold after that.

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My little one was tongue tied, but it was never picked up. I saw a Dr about it at about 9 months as when he poked out his tongue it looked forked from the tie pulling it back. She told me not to worry about it. I mentioned it to the Child Health Nurse a few months later, and she again said to ignore it. Then we saw an ENT specialist when my son had grommets put in and he said it was quite severe and needed cutting asap. His waiting list was about 7 months though. We went to a different GP who referred us to another ENT specialist with a smaller waiting list, and we had it cut about 3 months later, so my son was around 15 months. It was very easy, we went in the morning, he had his surgery about 9.30am, and he was munching on an apple by about 10am unaware anything even happened! The hardest thing I found was keeping him from eating before his surgery as he does like his food!

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My little boy was tongue tied. A lovely lactation consultant from North Shore hospital came in on a Sunday (her day off) as she knew I was leaving on the Monday to go home and snipped it for us. Not a whimper from the little fella and feeding immediately easier.

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I was tongue tied until I was 9, it wasn’t picked up as I was a prem bub so unfortunately I still can not pronounce some words correctly, then when I had my son I asked them to check and they completely missed it with him as well, I figured it out then he was just over two years and starting to talk properly, I also noticed the simple motion of licking an ice cream just didn’t happen for my little guy, he was in really quick for the tongue tie op, and he was fine the day after didn’t even know anything had happened! Lots of people say it effects their feeding, I know I had some pain but he seemed to latch amazingly, if it doesn’t get picked up don’t stress just get it sorted as soon as you know would be my advice, if your little one can’t poke their tongue out past their lip its a sure sign! Not really a biggy but its good to get sorted before language development progresses!

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Both my boys had tongue ties.  My first had it joined to the tip of his tongue and my second was halfway down. I got them to snip both of them while still in hospital. But so glad I did and it’s a quick easy process.

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My daughter had a tongue tie. I had no idea the only thing that gave it away was the clicking noise when she was feeding. The doctor snipped it (not as bad as it sounds or looks) and after a few days the clicking noise had stopped completely. The doctor said it takes a few days (sometimes up to a week) because they have to relearn how to feed all over again. We were also shown how to stretch it because it can grow back again.

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I had a lot of issues with breastfeeding my first and my nipples got so sore I resorted to pumping. Ended up pumping for 6 months! With my second, I was better prepared and realised there were a lot of things that might have caused the issues. My second also did damage to my nipples but I saw a couple of lactation consultants asap and at 3 weeks she had a simple posterior tie cut at the tongue tie clinic at Hutt Hospital. Took about a week for my nipples to heal then we were away! She’s almost four months now and feeding is going really well

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My Daughter had a tongue tie, this was not diagnosed straight away, only after major nipple damage and 3 weeks o persevering to no avail. Had it snipped my paediatrician and was instant relief! Procedure is very quick and she didn’t feel a thing

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Both my boys had it, my first wasn’t bad so we left it (only lower) my second had his upper and lower lasered at 6weeks and has been amazing ever since! It was picked up at birth by my midwife with both my boys. Would definitely recommend having it lasered, especially the top lip as most kids end up with a huge gap between there front teeth.

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Both my children were born tongue tied and both got snipped on day 3… Meant I had to hand feed them until they were 4 days old. Hard to establish breast feeding initially with both of them but hard work and with help with lactation consultant we managed fine

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My little boy was tongue tied. He got a quick snip of it when he was 1 day old, Dr said he cried but only due to being held down. There was a little bit of blood, didn’t affect feeding or anything but

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My eldest is still tongue tied but it doesn’t affect her at 10 years old. My youngest was 12 weeks old when she was diagnosed with severe tongue tie. We were seen at hospital as she had to be anesthetised for it. Then at 4 she had to have a frenulum release at hospital and we were told that she has a gap in her top palette that it was any worse she would need more surgery. Tongue tie made feeding difficult but being a mum with surplus milk supply both girls still got enough.

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We had an anterior tongue tie snipped at hospital, then found out we had a posterior tongue tie (and lip tie) at 2 weeks old when feeding wasn’t going well. Couldn’t get it lasered till 9 weeks old, so expressed and had to give formula top ups till then. Breastfeeding was better once tongue tie was lasered but still didn’t really work and my milk supply disappeared.  I am obsessed with tongue ties now and think there needs to be a lot more info and support out there for parents.

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My boy was tongue tied too, picked up when he was 4 days old, and only because a lovely nurse noticed how he would not latch and when she held him he screamed at her and she just said ‘I see the problem, may I take him for a moment?’ 5 minutes later she was back the paediatrician had snipped it and he latched on instantly, I cried so much I was over the moon! We had had a rough start with him in SCBU so this was such a blessing!

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Our first boy was tongue tied I didn’t know till a nurse in the family pointed it out I thought I just wasn’t good at breastfeeding and my boy was just a lazy sucker as a bottle would take over an hour to drink. He finally got his operation at 9mths were they had to put him to sleep and cut both ends of the tie and stitch them up as thick veins had grown. He was able to drink properly and finally eat solids afterwards.

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I have had 4 children with tongue tie. All four have had a tongue tie release. Two under general anaesthetic as the membrane was very thick. One of them was done at 11 days old under GA and the others have had theirs snipped within the first week. They give the baby glucose which works as a natural anaesthetic to newborns and they slept right through the procedure

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My son had it. I noticed it when he was crying a couple of days after he was born. It took 2 seconds to snip it and then he could latch on to breast feed. He didn’t react too badly (if at all) when the Dr did it.

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My eldest had a tongue tie and her tongue was snipped at 2 days old in hospital. My third child had tongue tie and it wasn’t picked up till after we left hospital. At that stage nothing was done. My baby was not latching properly though and she was falling off the breast. It was picked up again by the Plunket Nurse. Eventually she said to go see the doctor. The doctor referred me to the hospital who refused to see us. So we had to go and see a specialist who snipped the tongue but then picked up she had a lip tie. We then had to go back to the doctor who referred us to a lactation consultant who said that the tongue had not been snipped enough (even though we paid $180) and that her lip definitely needed to be done. So we had to go to have her lip and tongue lasered. It cost us $380 but well worth it. We haven’t looked back. She has filled out, is more alert etc

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I was told both children had tongue tie by our Plunket nurse, I took them to my GP to be told no they don’t have tongue tie. It wasn’t something I had heard of before then. A little confusing at the time. It put that tiny doubt in my mind so I got them checked by a third person! I still look now at my now three year old and wonder if he is.

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I had a big battle with my second as no one would believe me when I said he was tongue tied. I had a nurse come in with me to see a training Lactation Consultant and even when the nurse confirmed tongue tie the LC said no and wouldn’t even look. My boy was 3 months old when I finally got a specialist LC to confirm it and she booked us in to get it cut that day. I was hand expressing every feed but feeding with an eye drop as he couldn’t even take a bottle. But as soon as the tongue was released he was on the boob. Has not touched a bottle or dummy since.

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My daughter is 6wks old and her tongue tie was picked up when she was a wk old. GP said it may need to be cut if it was an issue. Well, while at GP I had seen him as I had mastitis caused by her not latching properly. Child Health Nurse referred us to Lactation Consultant to be cut. They had to cross the t’s and dot the i’s but it was done and she is feeding better. It should have been identified when she was discharged.

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My son was tongue tied and it wasn’t picked up until I went into the lactation clinic to get help with feeding, he was 6 weeks old. He was feeding fine, had obviously worked out his own way to feed, but my nipples were completely destroyed and split. The lactation consultant was amazed I hadn’t got mastitis. Thankfully the paediatrician was able to cut it still in the next couple of days; otherwise we would have had to pay for it. It made an immediate difference to feeding and he was able to poke it tongue out past his teeth finally, which he hadn’t been able to do either.

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We have literally just found out yesterday that our 5mnth old has a bad lip tie and small tongue tie, he’s been having feeding issues since day dot, we’ve always said he was a lazy feeder coming off constantly then just giving up tired now he is loosing weight and is crying in pain every feed, he has reflux and bad food allergies so its all been put down to that till I read something that made me query it and sure enough! So we’ve been referred to an oral surgeon so I can see the end in sight but it can’t come soon enough!

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My 3rd has this quite bad, couldn’t latch or feed properly. We got an app for her at 4 days cost us about $170. Apparently hers was very thick and despite what we were told she screamed and it bleed quite a bit. The snipping was over within seconds, she calmed down once she was feed… first time in 4 days she had a proper feed!

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My daughter had type 4 tongue tie, had trouble breast feeding when she was due to have it snipped (privately) she ended up back in hospital, hospital weren’t interested and showed no support, she finally had it done about a week later. We worked really hard with a wonderful lactation consultant but couldn’t make things work so she had to be bottle fed! :(:( took a long time to get over the guilt of bottle feeding her.

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Both my kids had bad tongue ties – and they both needed them cut twice to fix it, first in the hospital and then a week or so later at the doctors. My son never latched on, and didn’t even poke out his tongue until he was 6 months old. My daughter struggled to latch for about 3 weeks, but we got there in the end.

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Our baby is 16 days old now, he had a really bad tongue and lip tie so we got it lasered (it was to thick to be snipped) at 4 days old but he is still not latching very well with a nipple shield and lact-aid – I think he is still uncomfortable/in pain when latching or doesn’t like the shield

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My midwife spotted my son’s Tongue Tie when he was just over a week old. Surprisingly, he had mastered breast-feeding really well, so there were no obvious signs. We had it snipped as when they are very young, the procedure is very minor and tongue tie can impact on their speech in the future. Tiny snip, tiny bit of blood, tiny cry, then he fed and was fine again. Only thing I’d do differently next time is get baby checked before leaving the hospital. It’s so common and can be sorted before you check-out!

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My precious little boy was tongue tied…got it snipped on day two. The hospital picked it up and the lactation lady talked pros and cons…Now he feeds like a dream! Wouldn’t have been able to breastfeed properly otherwise.

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My lad’s grade 2-3 wasn’t picked up for a few days and by then we had already landed in NICU with jaundice (sent in early so only spent 2 nights rather than waiting for it to get worse and spend a week). Turned out he had lost more weight than usual despite his latch looking good. Was lucky that a lactation consultant was nursing in his room when he was hollering on second NICU day and she saw it. T-tie explained a lot, sore nipples, weight loss, and main cause of his jaundice (there were other factors) and easily dealt with. Hard to do his stretch exercises afterwards though as he has a very strong clamp! Caused a bit of a bubble palate and his latch still not brilliant on one side (I developed Raynauds of the nipples which is not great in winter! Bought some lanowool breast pads from Breastmates which helped a lot) but my boy is growing like a weed these days

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Our baby didn’t latch when he was born. He was fed expressed milk off a teaspoon for 3 days until my milk came in. From there he improved a little. As he grew it got worse and my nipples were a mess! At one point he was feeding 20-30 times a day. I went to a lactation consultant who only twigged when she saw the state of my nipples and that he wasn’t latching properly. Although his tongue tie wasn’t bad, he was really affected by it. She knew a paediatrician who came to the hospital who saw him a few days later, agreed to snip him and so at 5 weeks he was done and the difference was amazing! He latched straight away and had his first proper feed. When we got him home it was his big sister who noticed that he was sticking his tongue out for the first time

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My son had his tongue tie snipped at only a few days old. Midwife picked up on the fact he wasn’t latching properly. Lovely GP in Mairangi Bay did it (can’t remember her name) and all very stress free. And a very happy baby with full tummy afterwards!

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DD had tongue tie, was latching ok but a bit dehydrated which was put down to her size and not getting enough as milk hasn’t come in yet. TT noticed on day 2 (still in hospital cause of csec) and was snipped by LC. Wasn’t a big deal, just got it done, she didn’t flinch and feeding improved after that

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My wee girl was tongue tie, got our OBGYN to cut at our 6 week check as she had started to make popping noises when sucking she still does this now but put on a kg the week she had it cut. This was done at Dr Office no blood but got hubby to go with her.

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My son had one, they said to leave it and see how he fed. Two very badly damaged nipples that blistered cracked and bled each fed it got snipped. He didn’t even wake up. No problem with feeding after that.

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My little girl was tongue tied when she was born and had a lot of trouble latching on. After her membrane was cut at 2 days old I managed to get her breast feeding well. With no problems relating to the tongue tie at all.

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My daughter has a posterior tongue tie and upper lip tie which went undiagnosed until she was 7 1/2 months old. We had major problems feeding because of the damage it caused so I ended up exclusively pumping and still am at 14 months. The GP/LC that diagnosed it said it wouldn’t affect her speech so we decided to leave it alone. I don’t know why it took so long for it to be picked up though, we saw so many doctors, LCs and other specialists but none of them managed to figure it out… Posterior tongue ties aren’t always obvious so it helps to find someone who knows how to look for them if you are having problems that nobody else can explain…

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With number 1 I had 4 different people check his tongue from docs to midwives and no-one picked his tongue tie up. Finally after 3 bouts of mastitis I went to a lactation consultant wondering what I was doing wrong. She was a GP too and told me he had bad tongue tie and it would need lasering! This was at 12 weeks. Had to pay $600 to get it done and if it was picked up at birth could have been snipped for next to nothing. My feeding issues were due to a tongue not anything I was doing wrong. Anyway once 2nd was born he was in to the same GP at 6 days and had his snipped. Apparently it’s genetic and if one has it likely next will too

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My daughter wasn’t diagnosed with it until she was 4 months old, even though she could poke her tongue out; she has a narrow pallet which contributed to her problems with feeding. My milk supply had dropped so much that by the time she got her tongue snipped it was too late, my milk had dried up. Neither my midwife nor doctor picked it up. I now have a 12 week old son who has just been diagnosed with it and lip tie and even though I expressed my concerns with my doctor about it he just sent me to the family centre because my milk supply has dropped yet again. Although the ladies at the family centre are lovely they too just dismissed the fact that he could be tongue tied because so many babies are born with it now. So feeling fed up I had a friend who works in NICU to check it out for me as she has been trained to look for tongue and lip tie properly and sure enough he has. I must say I am getting increasingly pissed off with professionals just dismissing ties as if they aren’t important. They are IMPORTANT to get fixed as it can and usually always does affect breastfeeding and not only that but it has proven to affect speech in some children if it hasn’t been fixed. I have a nephew who wasn’t diagnosed with tongue tie until he was almost 3. He has wrecked his mother’s nipples to the point she couldn’t bf his sibling and he doesn’t talk much at all, yet there is nothing else wrong with him all because he didn’t get his tongue fixed as a baby. When a woman’s milk supply starts with a abundance of milk you have to wonder why suddenly a couple of months down the track your baby isn’t putting on much weight and your nipples are still really sore, so I trusted my instincts and got someone else to look at his mouth and now I’m waiting to get my babies ties fixed as I am having to top him up with formula and express milk which is time consuming with a toddler in tow. I read an article a few weeks ago about tongue and lip tie and it mentioned that it’s not so much the length of the tongue but the movement it makes when a baby is sucking and an unfixed tie can also contribute to problems with developing teeth. It can cause a child to have expensive dental care later in life. I was absolutely gutted that I couldn’t continue to bf my daughter for at least a year and I will be just as disappointed if this happens with my son. Something needs to be done to make professionals realise that getting a tie fixed is crucial for feeding a baby successfully.

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Amazing to see so many comments and positive outcomes. Our little boy was lucky enough to see Cheryl Gaines-Lewis LC who diagnosed ongoing baby breastfeeding problems as posterior tongue tie on top of anterior tongue tie which had been cut in hospital on day 3. Her and the fabulous team at wharekai pepe in Stokes Valley Wellington helped a dropping supply, a baby who had no idea how to suck properly (physically impossible with tongue tie like this one) and a mum feeling like it was all her fault! Took 10 weeks but was able to get to be exclusively bf without nipple guard and a chubby healthy baby! Thanks to Breastmates for stocking chu chu teats which helped with top ups when we needed it! My thought is don’t underestimate the importance of tongue tie correction! If it feels wrong- it probably is!

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My baby girl went undiagnosed for nearly 14 weeks, during which she cried most of the day and literally didn’t sleep. She’d be awake for 12 hours sometimes. I had 3 rounds of mastitis (typical of tongue ties) and hospitalised twice. I asked a midwife/lactation consultant there if a tongue tie could be the cause and she said I probably wasn’t latching her correctly but didn’t check. I then asked Plunket and they said if she can poke her tongue out she doesn’t have one – also didn’t check. After taking her to a chiro to try and calm her down, a passing comment made by her made me ask my GP who also didn’t have a clue but referred me to another Lactation Consultant who diagnosed over the phone. We then saw Yvonne LeFort in Auckland who is a TT specialist and she diagnosed for us. We finally had laser treatment for a severe posterior and upper lip tie at Laser Life Care – utter rip off at $880 but great service and care. Word of warning though – pinning your tiny baby down while she has her mouth lasered without any anaesthetic is pretty traumatic! But it’s quick. If you suspect something is wrong, ask and ask and ask until you get a diagnosis. Many midwives don’t routinely check for Tongue Ties and many GPs don’t know either.

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Isaac had tongue tie and upper lip tie which he had laser cut at 4 weeks old. We had trouble with feeding from day one, because of the tongue and lip tie Isaac couldn’t spread his lip open enough and he couldn’t get his tongue to the top of his mouth to get the milk out. I had way too much milk so if he nipple fed he would quickly get enough milk out having to suck so he didn’t loss any weight but if I hadn’t got it sort by 6 weeks my milk may have dropped off too much. The lactation consultant suggested we got both done by laser which is a high pressure water spray as only the tongue was funded as a free treatment. The laser treatment didn’t seem to hurt him, he cried heap because of the fingers in his mouth but as soon as it was over he was smiles. It has been perfect since it was sort we have had no problems feeding and all my breast conditions and problem like cracked nipples, etc were sorted. It isn’t something I would have left.

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My 14wk old was tongue tied. He was dreadful at feeding, very slow and his weight gain was minimal…half the health professionals said it was TT the other half said not to worry, so I took the bull by the horns and went to a new doctor who snipped it straight away at 7wks. He cried for a few seconds, but he cried more with his 6wk imms. Instantly he was/is drinking 150ml in ten minutes, whereas before it was approx 60ml in one hour that I had to physically squeeze from the bottle into him. Best thing that I could have done…since then he has thrived! It’s scary to contemplate, but (for him) it made the world of difference. I’d advise that if you really think its TT, stick to your guns and don’t be discouraged by any health professionals.

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Apparently it is a standard check. My son was an emergency c-section in a neighbouring town’s hospital; delivered as the shifts were changing, so standard checks weren’t done for one reason or another. I was in ICU for a few days before we transferred back to our home town. The hospital midwives kept telling me I was holding son wrong, positioning him incorrectly etc – made me feel useless. When I went home my LMC picked it up straight away – severe tongue tie to the tip. It took so long to get it fixed; it was eventually done under general anaesthetic in Wellington when he was 5.5 months old. Meantime I expressed, expressed, expressed. I would breastfeed him until he feel asleep exhausted (it took as much energy to feed as he was getting from the milk) and then wake him up and give him expressed breast milk. When we thought it would just be a week or two we cup feed him, the longer it took the more we went to bottles. We used a manual pump to start with; didn’t work properly and at 11pm one night, sleep deprived and at my wits end, hubby made the decision to go and get him some formula. I was heartbroken at the time, having not had the birth I has wanted, I had clung so hard to 100% breast feeding but in hindsight it was the right thing to do. We got an electric breast pump and then we were well away. Six months of breast feeding-express breast feeding- expressing every four hours was hard work but worth it. Harry and I did get our breast feeding experience, just a little differently; he eventually self weaned at 2.25 years. We couldn’t have done it without the support of our awesome Midwife and wonderfully husband (who incidentally made sure that Harry still got my breast milk whilst I was in ICU and completely out of it).

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With my first, my son, since birth he would breastfeed for an hour at a time. The lady’s daughter that I shared a room with would feed at the longest for ten minutes. Luckily, the midwives at the North Shore Hospital caught it for both of them. They both had the super fast snip before we left the hospital. My son didn’t even cry as there are few if any nerve endings under the tongue at that stage.

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My daughter cried mainly from understandably being held still for the few mere seconds that it takes. She cried and was easily soothed with a cuddle and a feed, and then she was completely fine. I would definitely advise to get it done as early as possible. It’s done in seconds and now we have no worries (No worries now with their feeding then and no later worries of any difficulties with speech impediments).

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I noticed immediately that my second son was tongue tied but was dismissed by the paediatrician. Said to the nurses that Breastfeeding didn’t feel right compared with my first son but they never suggested the tongue tie as the issue. A bout of mastitis at 8 days that continued poor feeding (despite great weight gain) lead me to a MCHN who finally said it was severe and needed clipping. Tongue done at 3 weeks, but only figured out the lip tie was a problem for breastfeeing months later (still not clipped and has lead to issues weaning). Wish there had been more info on it.

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My son had both an anterior and posterior tongue tie. I spent the first 4 weeks of his life in a lot of pain breastfeeding him until a lactation consultant diagnosed the anterior tongue tie and we got that snipped for free by a local GP. Things improved slightly after that but then the same LC spotted the posterior tongue tie and we got that snipped too. After that things were so much better (until teething started at 4 months but that’s a different story altogether). We’re really lucky to have this particular LC in my city as she’s picked up quite a few cases of tongue tie over the last couple of years and has been able to help several people

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My son had a tongue tie & I just could not get him to latch on at all. They found it when he was 10 days old in NICU & he was so much better after they cut it. I felt terrible & couldn’t watch but he didn’t even flinch. Was glad I got it done

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My daughter was identified as tongue tied 1 minute after she was born, I yelled cut it, midwife said no and after a bad week I found one Dr who would do it!! What is it, a national conspiracy to put mothers and infants through agony when we both knew.