help! new mum with tongue tie baby, need some advice on whether to snip (ouch!)

[eca]

I've just had 1st baby (12 days old) and noticed he has a tongue tie. MW confirmed it, but said they don't tend to snip them anymore and advised just to mention it to GP at his 6wk check.

But my friend who's a mw and breastfeeding counsellor said that actually it's probably better to get it snipped (and she could refer me to get it done) especially if I want to bf (which I am).

I've started to get cracked bleeding nipples on one side and both are very sore and bruised and both mw and bf counsellor said it was probably because of the tongue tie.

What should I do people? Any advice would be gratefully received. I understand it can also cause speech probs?

It is also done at Bedford Hospital (not on the list). I know that is too far for eca, but it might be on interest to someone else in the same situation.

grrr Went to see GP this morning and he was really unhelpful. Just kept saying they don't do it anymore and that he'd only consider it if it was causing problems!! Apparently me having painful cracked bleeding nipples isn't classed as a problem . And then he said he'd refer me to the local hospital - that he had just telephoned and the consultant said they don't do it unless the baby's not gaining weight - to have ds looked at there. So basically he refered me so they could tell me 'no' as well. I HATE it when doctors just fob you off.

Anyway, there is some hope. I mentioned the consultant that my bf counsellor friend had given me details for a consultant at another hospital (who's happy to do it) and the GP did say he would refer me to them as well. So, I am thinking we'll just go and see what they say.

eca - have you seen a hv yet, or are you still under the mw? I'm just thinking that my referral to the consultant was arranged by my hv - the gp wasn't involved at all (and would almost certainly have said no - he's that kind of gp). My hv called the hospital (which wasn't even one of our local ones) on the Tuesday and we were seen on the Friday.
Would going through mw or hv be an option for you?

If not, I hope the other referral works out OK for you, and doesn't take too long to come through. Sorry your gp wasn't very supportive.

Hi MM

I've seen the HV and she was supportive of getting it done, but said I need to see the GP to get refered. If all else fails my friend can actually refer me. Maybe I should have just gone with her referal, but I was trying to go through thhe system and not upset the HV/GP. I just hope that he does actually refer us to both hospitals and doesn't conveniently forget to refer us to the one that is sympathetic and will do the procedure.

sod going through the system ask your friend to ring up and refer you, it not the doctor who is suffering

Hi ECA,

Can I just add that I was born with a tongue tie which went unnoticed. I suffered alot of teasing at school due to the fact that I couldn't stick out my tongue. It also affected my self esteem re kissing etc as I thought that a bloke would think my tongue was weird. I would always encourage anyone who had doubts about getting their childs tongue to be cut. I have also read that it can sometimes be hireditory (sp).

Good luck and i'm sure your lo will be fine.

This post is making me very sad and shocked - my ds (who's now 8yo) had a tongue tie and bf was a nightmare, and I had to change ot bottle feeding. They refused to cut it, and told me to wait. When he was 4yo he finally had it done, under general anaesthetic, day in hospital.

Can't believe he could have been spared all of that.

My dd is now 3.5yo and same problem, same advice.

talk to nct- they have coucellors trained in this sort of thing- and they have nasses of experience. they will help you find someone in your area who has the sort of experience you need. you on't have to be a member to ask them for advice.

thanks for sharing that Arransmummy. Sorry to hear you had such a bad time of it with tt. Makes me more convinced to get it done.

Twoisplenty - at what you've been through. TBH I think if i didn't happen to have a friend who knows about it, or if I didn't come on MN I would probably be going through that in 4yrs time. It just makes you wonder how many people end up going through stuff unecessarily because they've not got the right info or support.

Hi eca

I've namechanged for this because rl friends know about my story, but I feel very strongly so wanted to give all the information I could. I live a few miles from Norwich. Ds was born 2005, and I immediately noticed he had a tongue tie. NOBODY was willing to help. I tried so many different angles. GP very anti (why?!?). Finally, one HV agreed to refer DS if I could find someone willing to 'do the snip'. I rang around a load of places in Norwich & a wider area and NONE of them were prepared to do it without anaesthetic. DS would have had to have an (expensive) consultation before they would even decide whether to do it!

Then I found Mervyn Griffiths in Southampton (author of Mears' linked article). No consultation required, just a phone call to his wonderful secretary, a fax from HV to DR G's secretary and by the end of that week, we were there. We were at the hospital less than 1hr. Had quick chat in Dr G's office, paid £50 total, went onto ward, Dr G whisked baby away (then 12wks old - Dr G doesn't use anaesthetic if baby under 6 months, I think) and by the time I had unclipped my nursing bra, baby was back (1 drip of blood on floor and crying but not as bad as immunisations!) & latched on 100% better! Dose of Calpol afterwards (back at hotel) optional!!!!!! We stayed overnight at Holiday Inn Express that night, to save making the 3+ hr journey back home again. Ds slept as well as usual, if not better. He has never suffered any ill effects, only positive ones.

My thinking is & was: why put up with feeding problems and the risk of later speech problems, oral hygiene difficulties (can't use tongue as efficiently clearing behing gums etc), not being able to lick yoghurt lids etc etc, which may or may not be due to tongue-tie, when for £50, a bit of a trip, and a tiny, very short-lived period of discomfort for your precious one, you can rule it out. At the time, DR G said that he had NEVER known any complications/undesired effects. I was told that in Southampton Gen Hospital, there are midwives/other ward staff on post-natal ward trained to do snips on the spot for every baby born with a tongue tie. Why not everywhere?

Dr G's comments to me included:
Breastfeeding should NOT be painful (I know there are other reasons why it can be painful, but this one is usually treatable).
It is every child's right to be able to stick their tongue out at adults and lick ice creams!

I really think there isn't a lot to lose, but so much to be gained.

Please let me know if I can help in any way.

DD1 has tongue-tie, and breastfed with no problems. We went regularly to the children's hospital where they monitored it. Said it may snap of its own accord. It didn't, but they said, when she was 3 there was no point in doing it. It wasn't affecting her speech and they would have to have done it under general anaesthetic. At the time I was relieved, but having read some of these posts, I can't believe they could've just done it straight away without a general! I'm worried that it will affect her self-esteem (if she gets made fun of for not being able to stick it out properly, and her confidence in kissing when she's older. Oh bugger.
Eca, if I'd known when we first noticed it what I know now, I'd have had it done straight away.

Nomoretongueties - Have just read your post. So glad you got it sorted. Do you know if they'd do it for a 4 (nearly 5)year old with just a local anaesthetic, or would it have to be a general? I know this didn't apply to you, but just wondering if you know? I think I'd have it done if it wasn't for the risk of a general.

saggers, I am fairly sure that it would have to be a general. I'm not an expert though. I'm sorry that you are having to read all this knowing that your DD1 can't have the quick-fix solution that has been talked about

Thanks for that. I'll look into it.

Wow. What varied experience. My DS was tongue tied (discovered at 5 weeks after disastrous attempts at breastfeeding) by the HV. It was too late to do the snip there and then but we went on the waiting list at the local hospital (JR in Oxford) and he had the operation at 8 months old. It did involve a general anaesthetic - but it has been a huge success. Already loads of different sounds from him but a month later his tongue is only just learning to come out. So, a warning, the longer it's left the longer it takes to catch up with normal development. If you have to wait for months don't panic - I went with bottle feeding (which worked for us) and the GA was only 'on' for 20 minutes. I panicked about having to put my DS through all this but to be honest he went in for the operation at 8.20am and was back in my arms at 8.40 (and that included putting him under and coming round). We were all home by 10.30am! I do wish that midwives/doctors looked for it at birth and sorted it out then - but given as how that didn't happen I think we came up with the best solution for us.

hi nomorett's - thanks for sharing that. I think there is a consultant who will do it at N&N now (according to my friend), so hopefully we'll get it sorted with him. But I think doing what you did would be a good plan b for us.

saggers - so sorry to hear you didn't have all the info straight away. Is your dd's tt no very bad, if it's not effected bf and speech maybe it's not, which might mean she will be ok in the future?????

KW13 - eek that's making me panic a bit if 5wks was too late to do it without GA. ds is 2wks yesterday and i've already been panicing that this referal (to the sympathetic consultant) will take ages to come through, if the doc does it at all.

I had a bit of a meltdown about it this morning. I found blister with puss in (sorry if tmi) on one nipple and the other is killing me. (Not to mention the boob I'm feeding on more (because it's not as painful) is twice the size of the other one!!) And it's not easy with docs who are crap and i'm not feeling confident about them trying to get me refered asap. It's made me so cross that the one i saw didn't give a damn about me and the pain i'm in. .

helenhismadwife - think i'm going to take your advice and just get friend to refer me instead/as well.

eca - no it's not severe - she can lift it slightly, and it didn't affect her breastfeeding, luckily. Her speech doesn't appear to have been affected, but she can't stick it out - the tip comes over her teeth but doesn't come over her lip. I hope you manage to get your ds's sorted out. Good luck.

Tang - good to hear that NICE approve.

Eca - great news if N&N have someone who can do it. There was someone who 'might' have been willing to do it for DS @ N&N, but only under GA, after a long wait on a waiting list. Make sure you get all the info when you are put on the waiting list (ie now, not after a long wait), so you can make an informed decision asap. Can your friend give you any more info about local referral, waiting times etc? Can you ring N&N direct (armed with surgeon's name)?

You might like to ring Southampton General Hospital and chat to Mr. Griffiths' secretary just in case, to see if it will be a possibility for you (as a plan B), how much it costs etc. - you have nothing to lose except the cost of a phone call.

Please keep us informed.

woe is me ds now has oral thrush too!!! My nipples seriously HURT ! They are red and inflamed and cracked. And now he is in pain too and struggling to feed . I have been to a different, but equally incompetent docs (i'm sad to say), but after reading up on here, ringing bf helpline and chatting to my friend I think we're on the way to it clearing up. I'm determinded to carry on bf and am seriously looking forward to doing it pain free !!

On a positive note... bf counsellor friend is coming over wednesday and going to ring N&N hospital and get me refered asap/find out how long it will be until we can be seen and generally sort me out!

tang - thanks for that. I'll try and look them up, or ask my friend if she knows.

nomoreTT's - thanks. I'll get my friend find out exactly what the policy is re:anasthetic. I'm not really happy for him to have any if it can be avoided.

My ds 9 months has tongue tie. I was the one who spotted it. I'm a bit confused as I spoke with the consultant at Southampton Mervyn Griffiths and he wouldn't do anything about it!!! Somebody posted earlier regarding this doctor. I didn't have a problem bf btw.

This was very early on, ds was about 2 weeks. There was a midwife willing to do it but I insisted I spoke with the so called expert Mr Griffiths and he advised me not to do anything.

yogimum - do you think his decision might have been due to severity of your DS' tongue-tie? I know the problem occurs to varying degrees. My DS' tongue was tied right to the tip. I know that having feeding difficulties is the main criteria for Dr Griffiths, although the problems don't have to be severe. Don't know much more than this though...

Eca - you're doing really to persevere b'feeding - keep going! I'm sure that your DS will be able to be helped, let's hope it's sooner rather than later.

nomoretongueties Mr Griffiths only spoke to me over the telephone, wouldn't even see ds. I was even willing to see him privately.

Good news ... Took T to the consultant this morning and he got his tongue tie snipped. Doc said it was quite a bad one. Poor little mite. It wasn't quite as distressing as I thought it would be for him. I think I cried more . He latched on and had a feed straight away and was asleep in about 20mins. It felt more comfortable feeding straight away and so I'm really hopeful about bf being painless now!!

yogimum- that's odd I wonder if he thought because you weren't having probs bf it would be ok.

Just want to say a huge thank you to everyone who helped me out and gave me advice. I don't know what I'd have done if I hadn't been so encouraged to get it done and supported on here.