anyone successfully b/f a baby with tongue tie?

[mumoverseas]

DS is 12 days old and struggling to get b/f established. We were only told he had tongue tie when about to leave hospital when he was 3 days old when the paediatrician phoned my hospital room and told me on the phone and we have been given no real advice/support with regards to this although a nurse mentioned he may have problems feeding and may have further problems later when learning to speak.
His first few days my milk had not really come in so I was trying to feed him but also giving him top up bottles as he was losing weight. I'd hoped that when my milk came in I'd increase the b/f and cut out the bottles but we are still struggling. He has real problems latching on and staying on and the longest we can manage in one go is around 10 minutes. I desperately want to carry on with trying to feed him myself but wonder if I'm fighting a losing battle and should just give in with the bottles. It breaks my heart that he gets so upset/hungry when we are trying to feed.
We have no b/f counsellors or midwifes/health visitors where we are living so I was hoping that there may be someone out there with experience of b/f a baby with tongue tie?

Hi mumoverseas. My DS is 6 months old now but I BF him until 3.5 months with a tongue tie (it took me that long to get it diagnosed and snipped). It took a while for my milk to come in too and he lost more than 10% of his weight in the first few days; a lot of his feeds were 10-15 mins at first (not sure if this is unusual for a newborn or not - sure someone else can let you know that) and he fell off a lot. I didn't know he had a tongue tie at this point so didn't know any of this was out of the ordinary really. Are you feeding him often? Anyway, things were incredibly sore at first but we eventually got the hang of it. By that I mean that he was getting enough milk - it continued to be tolerably sore for me until 2 weeks after he had it corrected. His feeds actually ended up being very long - 45 mins+ each time, as I guess he was an inefficient feeder.

So it can be done - but obviously tongue ties and babies are all different so wouldn't want to tell you what's right for your little one. Have you tried to contact the paediatrician again to talk about it? I think that would be a good first step if there's no other support. If he/she phoned you to tell you then they might be able to tell you if there's any option to have it snipped where you are or at least talk it through with you.

With regards to future problems, the doctors at my hospital said that it's not often a big problem with speech, kissing etc. - that children learn to work with what they've got or that it even breaks naturally at some point.

Let me know how you're getting on - I remember those first few days/weeks.

I would really really try to get his tongue tie snipped, I know quite a few friends' babies who had tongue tie and it radically changed feeding - although most of them had quite a distance to travel to a hospital to get it done.

Hi arthymum and MrsJamin, many thanks for your replies.
The problem I have is that I'm currently in the Middle East, hence the lack of support. The paediatrician really wasn't much help and the mention of DS's tongue tie was almost an afterthought, after he'd told me he was a bit jaundiced (all over the phone!) I tried asking a few questions at the hospital but they really were not interested so I'm thinking I'll have to wait until I get back to the UK in June to get it sorted out unless I can find another hospital that may be a little more helpful.

I've breastfed my other DC (DS is number 4) with no problems and just wasn't sure if he was just one of those babies that didn't like b/feeding or whether perhaps it might be his tongue causing the problem.
arhtymum, very reassuring to see that you managed to keep on with the feeding so I will carry on trying.

Mumoverseas - I hope it works out for you. Is it sore for you at the moment? That was the main problem I found. If so, using Lansinoh prior to each feed helped (and taking a deep breath ). It did get a bit easier as he got bigger - I guess his mouth and tongue got a bit bigger and muscle control stronger?

One thing - it gets harder for them to snip it the older they get. At 14 weeks, DS was borderline - because they do it without anaethetic, they have to hold them down and my DS was a big strong boy by that point! The first try they gave up but a very good surgeon managed it in the end. (Sounds horrible but DS wasn't bothered by any of it) If they feel the baby is too big, they might only do it under a general anaesthetic - so it depends how you feel about that? And not all UK hospitals offer it. So it might be worth trying to find a hospital/clinic out where you are, like you say, if possible. It did make a huge difference to feeding.

Good luck!

Hi arthymum, Its not at all sore at the moment which I guess is a bit surprising. He is not biting me or hurting at all, he just can't seem to latch on properly or stay on. The longest we've managed is around 10 - 15 mins with me being too scared to move in case he falls off. My DD aged 2.5 had no problems feeding and would stay on all day if I let her which is why I've been wondering if his tongue is the problem.
DH and I have just been talking about trying to get a referral here to find out what can be done and if not, we will try to fly me back to the UK as soon as possible once we have little one's passport. Thanks again for your advice

Mumoverseas My DS was diagnosed with tongue-tie (although not severe enough to have got it snipped easily).

I found that feeding got better with practice and with growing a bigger mouth.

Personally I would get it snipped if you can, but provided you are feeding often, your baby has wet and dirty nappies and is gaining weight, you might get away with it.

mumoverseas - ds2 had a tongue tie. I didn't notice it (even though I remembered to check ds1 as soon as he was born, kind of forgot with ds2 ) until he gave this enormous smile and bang! there it was. It made everything click into place - that intially feeding wasn't too bad, but with time it got harder and harder as he got fussier and fussier, head banging, frustrated, increasingly frequent feeds. Lots of info on kellymom and hunkermunker's site howbreastfeedingworks, but basically it can get worse as your let down become less forceful once feeding is established and they have to suck harder to get the milk.

I was lucky and knew the number of a lactation consultant. She came over the next day, and referred me to a local paediatric surgeon (who is also very very pro-bf) who phoned us within a day!! We were in the next week (she offered sooner if he wasn't feeding/was losing weight - but he wasn't that bad). She looked him over and said it's not how far forward the tie comes, it's how restricting the upwards movement of the tongue it is, as this is what is important in bfeeding. ds2's was pretty tight, so she snipped it then and there. It wasn't pleasant - some babies sleep through it. ds2 didn't . But from the first feed afterwards things immediately were better and within a week he was sleeping 11pm-5am.

OTOH, I only knew to check for TT because I (and my father) am TT. My mother bfed me for 6m, though she thinks the TT had something to do with why I self-weaned at that age, who knows. Point is, it is possible to bfeed a baby with TT. But IMHO, if it is causing problems from the beginning, I would think it is better off being snipped, but I don't know where that leaves you where you are, sorry.

mumoverseas- my ds is 18 days, and exclusively bf with a tongue-tie. We are seeing paed for snipping next week. (tbh I think DH had tongue-tie too- could never get enough milk, bf or ff, and it still hurts as an adult to stick his tongue out).

I have found that the best position for feeding was me lying back on cushions, him on top of me, his legs pointing down towards my legs IYSWIM.

As he has fed more- he is getting better at latching and his technique has improved loads - especially over last 7 days.

As 2happy says- we've been lucky- excellent bf support where I live, and literally around the corner for me.

Come and join us on the jan 09 post-natal thread- lots of us on there, so plenty of support should you need some, and loads of chat too.

How I wish I had seen this site when my little one was tiny! She was TT'd I knew it, i could see it, but the doc and midwife told me it was nothing to worry about!!!

Feeding was possible but very hard, like another nm poster, my little one could only feed for short periods of time before the effort exhausted her - so we were up to 10 feeds a day on bad days! at every visit i asked about the TT to be told it would correct itself - and that it was not policy to have it snipped - they expected it to snap on its own - i was advised to leave her crying long enough - no way was i about to do that.

After 4 long months of getting nowhere, i had the idea to ring direct to the hospital and referred myself - happily they agreed to see me and were astonished that we had not been referred by the gp as the tt was bad. we were referred to the surgeon the very next day and yes, up to 6 months they do the procedure with no pain killers. they ask that you not feed the baby for several hours to make sure they are nice and hungry - that way they latch on immediately after the procedure and the sucking acts as pain relief. my little one feed and fell asleep almost immediately.

It was distressing, they swaddle the babies to keep them still and its done very very quickly and there are several of you in the room at the same time. The other babies there were all under 8 weeks old so did not cry much. my little one was sitting up by this point watching with interest but no understanding of course!

her tongue was swollen for a days after but by about two weeks later the difference in the feeding was fantastic. she was sucking more strongly and less frustrated, she gained weight more quickly too.

I was tongue tied but mine was done before i left the hospital. my nephew had to wait until he was 6 months old, but which time he had to be sedated to do it, much more serious - and had terrible trouble weaning - he could not move his tongue enough to swollen the food.

I am happy to say I carried on feeding her until her 1st birthday.

Good luck

If you can possibly get it cut, please do. Some babies can feed with tt without difficulty, but many have real problems - and though you've not complained, I strongly suspect the "latching" is pure agony for you, too.

This info from Mervyn Griffiths may help, and you could call his office at Southampton General and have a chat, see what they advise - he's a leading expert internationally, and may know someone local to you who'd do it. His secretary is wonderful and very kind.

Most babies feed really well after being cut - I think something like 80%? So if you can get it done, it can apparently be an immediate miracle cure in many cases.

I agree with Qally. You should get it cut if you can. Can it be done at the hospital he was born in? It only takes a few seconds and it sorts out the problem.

My DD's tongue tie was cut at 9 days old. It took a week or so for the bruising and bleeding to heal, but it solved the problem. She was then able to open her mouth properly and get a proper latch. She started to get more milk, my supply built up and she regained her birth weight at about 4 weeks old.

I'm still breastfeeding her and she's 14 months old now.

I BF till my ds was 7 months with a tongue tie....he actually split the tie himself...i have no idea how when he was 8 months or so.

I was told when he was 3 months or so about his tongue tie as i had no idea at all. Had no problems feeding him, he latched on fine. His speach is ok (he is nearly 6 now) and he has no lasting effects from it either.

yep still bf dd who is nearly 10 months and has a tongue tie. She latched on minutes after she was born and is still a super efficient feeder.

i´m sorry am in a rush and no time to read all replies so probably repeating what has been said..

My ds had tongue tie, my sister spotted it when he was about 5 days old. From there feeding became harder, he would feed for 45mins-hour, latch was very painful, he lost a lot of weight and people started muttering about tops ups. He had a lot of painful wind too. When he was 2 weeks old i got the doc to look at him, he told me to wait a couple more weeks to see how i went.

Went back and got referred to a pediatric surgeon (the only one that can do it here) which took until he was about 8 or 9 weeks i think. It was so hard. Really hard. But I was determined to hold out and when he got it snipped the difference was amazing. i had quite a lot of nipple damage so it wasn´t totally painfree for a couple more weeks until my nipples had healed. But i could tell his latch was better and that he was happier feeding. From about 10 weeks onwards it was great and I stopped breastfeeding him a couple of weeks ago at 21mo

So it worked out fine for us but if I have another baby I will be insistent that they check for it and get it sorted (snipped) ASAP to avoid going as long as we did.

DS1 has tongue tie and had it snipped at 2yo, although they said his speech was advanced. He was BF until he was 5 months old, feeds took a long time (looking back now cf. DS2), not sure if that was due to the tongue tie though. He gained weight happily. Bottle feeding him was so messy and I am sure that was due to the tongue tie - wearing 3 bibs etc, losing far more than normal down his chin.

Good luck

I agree it depends on the tie, it sounds like it would be best to get it snipped. My dd is t-t but has good movement and so had no problems bfing still going at 14m. We are waiting to see if her speech is affected, hopefully not!

My dd3 was tongue-tied.

I had to fight very hard to get her tt divided - HCP's tried to argue that because dd was thriving and putting weight on well, the tt wasn't affecting breastfeeding. They were wrong!

Dd may have been thriving, I, on the other hand, was not . She fed literally every 1/1.5 hours, every day and every night. She exhausted herself whilst feeding and only ever fed in short bursts which left her hungry not long after a feed. Such frequent feeding is fairly normal in a newborn, but this feeding every 1/1.5 hours went on day and night for 13 LONG LONG weeks when they finally agreed to divide it.

They wouldn't perform the division without anaesthetic (sp?) so we had to wait till she was 13 wks. It was sooooo worth it. Dd immediately began to go roughly 3 hours between feeds and my poor nipples began to heal at last

The added bonus was that she only ever took around 5 minutes to have a full feed, she was super-efficient

She self-weaned just before Christmas at around 16 mo old.

I would really recommend you push for the tt division - it made a massive difference to us

DS was tongue-tied - I made the MWs check cos DH has a tongue tie and it can be hereditary. 3 MWs told me he was fine but he still couldn't latch on properly. Then I saw the lactation specialist and she ran her finger under his tongue and said Yes, partial tonguetie.

She offered to refer me immediately to have it snipped or I could wait and see; about a week after getting home, the MW who came to see me demanded to see me bf'ing (was taking about 2 hours at a time) and suggested the referral again. So we went to see a nice paed, who wasn't anxious to do it because it was only a partial and it might make no difference - but did it anyway when I said I wanted it done. The only anaesthetic was a sip of sucrose water to make him a bit dopey and a drop of (I think) novocaine under his tongue - a nurse held DS, the snip was done very fast, he didn't even whimper and we were told to go and feed immediately so he used his tongue straight away. No problems.

It might have only been a small snip but it made a hell of a difference, mostly because it no longer felt like DS was sucking razor blades out through my nipples! For a while, he still took a long time to feed but I think that was more habit - he gradually reduced his feeding length to more normal. Best thing I had done for both of us.

I have heard that other places either refuse to do it at all or you have to go private, which I think is outrageous - it is such a small thing to do, takes very little time, causes next to no distress at that age and virtually no problems afterwards but can make such a massive difference to bf'ing! Having it done later is a much bigger deal - a friend of mine had her son done when he was 3 and he needed a full on anaesthetic etc. (She hadn't noticed he had a tonguetie when he was a baby, but she found bf'ing him very hard going and had to stop at around 5m)

thank you all so much for taking the time to post. Lots of really helpful information for which I am very grateful.
It appears that getting it snipped is the way to go and so DH and I are trying to get a referral out here (Saudi Arabia) and if we don't get any joy we will try to get me back to the UK asap to get it done there as it seems as if the sooner we get it done the better.
I am pleased to report that last night I managed to get him on and he stayed on for 15 minutes which is our record so far so I'm keeping at it although he had to have a bottle this morning as was so upset/hungry he wouldn't latch on. The poor little thing has picked up a really bad cold and cough which doesn't help

Thanks again for all your help and support. Don't know what I'd do without MN as being so far away from the real world is really hard at times when no anti/post natal support groups etc.