DS has tongue-tie, local HCPs Not Helpful, can anyone give me any advice?

[QueenOfFlamingEverything]

DS is 10 days old and tongue-tied. I noticed this in the hospital after he was born and asked for referral to get it divided, but was fobbed off and told they don't treat them in this area unless it causes trouble with their speech development

They eventually made me an appt in a month's time after I insisted and pointed out NICE guidelines but today I found out this is just a 'follow up appointment' to 'see how we are getting on'.

Turns out round here there is no provision at all for division, the nearest place it can be done is 40 miles away and I will need a referral from our 'local' lactation consultant who has a clinic also 40 miles away. Which I cannot get to, and she is on holiday for two weeks as of tomorrow.

I've just spoken to her on the phone and she reeled off a load of instructions for how I should be feeding him which made no sense at all and told me to go to my local BF support group. She said she can't refer him without seeing us and that local policy is to work on BF technique rather than divide TT as they don't like to subject babies to unnecessary surgery. She told me that as he is my second baby my nipples have changed shape (er, they haven't ) which is probably why I can't get him latched on right. Maybe I am being unreasonable and hormonal but to me she just came across as bossy and unhelpful.

I BF my DD for 18months (she's 7 now) and have a fairly good idea of what I'm doing. DS is simply unable to maintain a good latch, he slips off as often as every 30 seconds and tbh its getting worse every day, he gets agitated and swallows air, or falls asleep and wants feeding again in 20 minutes. I can get him positioned so he gets a good mouthful, it doesn't hurt my nipples which I assume is a good sign, but he cannot stay on whatever I do. I don't want or need 'support', I can see for myself that his TT is affecting his ability to feed, especially at night, and want to get it divided.

I have looked into getting it done privately but nobody seems to cover my area or even close. Obviously I am going to try any BF techniques suggested, if I can remember any of what the LC said anyway, but I really feel he needs it divided and am quite upset that this isn't looking possible.

Anyway is this correct/normal practice, and
if not what can I do, and if it is then has anyone got any advice on how to work round the TT? Thank you.

It depends where you are, really. In Winchester they have that policy, for example, but Southampton will divide, and you can get it done privately there for about £50.

Gosh what a lot of unnecessary fuss you seem to be facing.

Congratulations btw, and dont worry your DS is still young enough for the next few weeks to get this tackled.

I'd try the local breatsfeeding councillors, they must have knowledge of theis.

Sorry no real advice, just wanted to say I'm sorry you're facing this situation. DD had a tongue tie which was snipped at about 10 weeks (it wasn't picked up until then) and I had it done through contacting a lactation specialist who fortunately ran an NHS clinic about an hour away from me. We went up and as we'd travelled they snipped it then and there - not nice, but within two weeks feeding was pain free.

Up until then, IIRC the things that helped me were nipple shields, nursing lying back and letting DD sort of latch herself on and keeping watchful eye for mastitis and pumping/feeding a lot if red patches started to appear. But it was difficult so you have my sympathy. I hope someone else might have some more ideas for you.

Mervyn Griffiths at southampton hospital did ds's at 6 mths. It made a hell of a difference. Don't know if he is still there? We had to travel from Midlands. Alternatively try a Maxifacial(sp?) surgeon.

Cathycat, Mervyn was there in 2005. I didn't actually have it done through Mervyn, I managed to get it done through the breastfeeding support nurse attached to the Princess Anne in Southampton. Free. I am not quite sure how, to be honest. My midwife just gave her number to me, and I ended up popping in and 'snip'.

our ds was born with tongue tie and it was the mw who visted me at home, not the mw in hospital, who referred him to get it snipped. we got the app in a week and he had it done at about 1.5 wk old (he never woke up from leaving the house with dh to getting home!)

if you w=mw and hv will not refer i would go to gp and say it is causing feeding issues (it was definately the case with me and ds, and this is an issue i have with teh so called breastfeeding specialist nurse at the hospital who said it was minor and to keep bf ds even though he was chewing my nipple to deathj and not latching on correctly and screaming in frustration when wanting milk) and you want it seeing to, not leaving. i don't see any reason why you aren't entotled to get this done: all they do is curt it, no anaesethic (sp?) or treatment etc so it's prety much free!!

cut it, not curt it!!!!!!

Maxiofacial? I think?! Please get in touch with me if you have any difficulties - Mervyn Griffiths is the easiest route. You may need a referral from 1 health professional eg health visitor. Ask me to send contact details if you struggle for help. I know a lot of info about this subject through bitter experience.

My DS2 has TT and it was spotted a week or so after birth. At the time I was also feeding his older brother and feeding the younger one didn't appear to be a problem.

I consulted widely: a speech therapist, the specialist MW, my GP and the oracle that is mumsnet and decided not to have it snipped unless he failed to start babbling at around 9 months or so.

He has been fine, and to be honest it is barely noticeable at 16 months.

I have to mention that two of my children have had tt's (out of 4). My first tt baby (second child) desperately without question needed it sorting for feeding purposes whereas my second tt child (third child) had a definite tt but it didn't affect feeding. an experienced mum can tell! thankfully fourth baby was fine!

llareggub, the difficulty with that approach is that once they are around 9 months, they have to have a GA to have it snipped & stitches afterwards.

To have it snipped as a newborn takes around 5 seconds and a breastfeed. My DD1 slept through it

I am glad it worked out fine for you though

I have no experience myself, but know that the pct I work for has a policy for management and promote dividing with babies that are less than four months and having breast feeding problems. If you google 'tongue tie policy' it comes up and may be of some help and give you some evidence to go back to the HV or GP with

my dd1 had tongue tie and trouble latching on. It took 8 weeks of 'proving' that she wasn't gaining much weight in order to get them to do something. I was distraught and dd1 was frustrated. we consulted HV, GP, BF counsellors, etc. the HV worked with the GP to ge a referral. at 8 weeks, 2nd visit to the consultant, he snipped it quickly, dd1 had a breastfeed immediately afterwards, no stitches, and from then on fed so much better.

dd3 has a tongue tie as well but has always latched on ok, feeds well, and there doesn't seem to be a problem so we didn't do anything about it.

as Cathycat said, an experienced mum can tell.

try a private LC?
where abouts are you?

My DD1 had a severe tongue-tie and we had it snipped at 10 days old. Took 5 seconds and she didn't even cry. We didn't want to wait weeks to be referred, so paid a Consultant privately (got his details via local NCT) at Kingston Hospital, Surrey. Only cost £60. Worth every penny.

DD2 was born 3 days ago..... and also has a tongue-tie. The hospital here said they wouldn't do anything about it as that is their current policy. I think it is causing a few feeding problems so intend on going privately again. Whilst we no longer live in Surrey, I would be prepared to do the 4 hour trip there to see the same Consultant if I cannot find anyone around here.

Thank you everyone.

Well after a few more phone calls I have established that local policy is that the surgeon will only accept referrals from the 'local' LC, and she will not refer unless she has seen and worked with us and it has not helped.

So, we are expected to make however many 80 mile round trips to see her in the hope she will agree to refer us.

I am looking into private treatment but cannot find anyone closer than 100 miles away. Going to make phone calls first thing monday.

What a ridiculous policy!

I had a similar situation - I couldn't find anywhere locally (Herts) where I could get DS's tongue tie divided. I was told it wasn't seen as a feeding issue.

After getting a diagnosis from an LC (it was a posterior tie, so although I suspected a tongue tie, I couldn't be sure), I contacted Mr Salesh Patel's secretary at King's College in London and found out what I needed to get him to divide it. He was happy with a GP referral, so I then went to my GP with all the info in hand - diagnosis, NICE guidelines, referal request and Mr Patel's fax number. I got the impression that although my GP didn't initially volunteer any info, once I came back and asked for the referal he wasn't in any position to refuse. If he had, I would have just seen another GP.

If the 'local' surgeon only accepts referrals from the 'local' LC, it may be worth checking with the next closest hospital that treats tongue tie (where are you?). You are not obliged to see someone locally - you might have to travel further, but hopefully it would only be one return trip. King's College was not the closest place to me, but DS met the referal criteria and they had the shortest waiting list - he was treated within 2 weeks.

Good luck :)

Do you live anywhere near Manchester, or could you travel there? We had no luck with the NHS either but found this great ENT surgeon who snips TT on the NHS in Manchester but also does them privately You can make a private appointment with him at the Spire Hospital (used to be the BUPA hospital) in Manchester and he will snip them for £150. He does not need a referral (although it wouldn't do any harm to have one) as he assesses them himself to decide if they need snipping. He snipped my sons severe TT 4 hours after we phoned up and feeding was so much easier afterwards. Even if it's miles away from you it's worth a try. Why oh why isn't TT taken seriously? It makes me so mad. And unnecessary surgery?! It takes 2 seconds! They snip it with a pair of sterile scissors, you stay in the room and hold your baby. My son cried for 30 seconds maybe, there was a spot of blood nothing more, then I distracted him with a toy and he was smiling again 5 minutes later! And you can then feed your baby properly. Not what I call unnecessary!
Anyway here's is web page/contact numbers:
www.manchesterentdoctor.co.uk/

Browney, that surprises me about Herts. We're in Herts and were referred to the (brilliant!) specialst at Bedford with hardly a murmur. That's surely closer than Kings?

can you find out if your local community dental service offers this as my dh is a senior community dentist and has had training to do this. he usually does it at about 2/3 days old when baby have just left hospital, he says they seem to suffer very little when they are so small and parents seem hapy with the results.

NICE guidelines.

I've read the NICE guidelines and they do say that 'Skilled breastfeeding support is an integral part of the management of breastfeeding difficulties' which I assume my the local NHS are taking to mean that TT should only be divided if the skilled support is not successful at resolving any feeding difficulties.

But skilled support simply isn't available to me, it is provided in a location I cannot access, and no matter how skilled it is it cannot undo a TT! We do live v rurally and provision of all sorts is patchy - DS is 15 days today and we've not seen a midwife for over a week. But 40 miles each way to see the LC is ridiculous imo.

I am so tired I haven't the energy to argue this tbh after yet another night of DS frantically trying to stay latched on. He feeds ok though for short periods, but simply can't manage to comfort suckle which he finds immensely frustrating and makes me so sad for him, he gets so distressed.

Queen - if I had my time again I would know about my son's TT and get it snipped.

What can we do to help? Is is a list of private surgeons who will clip the TT?

Oh I just need a vent really I suppose, that and any tips for helping DS maintain a latch. This is just the downside of living so rurally, everything is harder to access and further away. I should be glad really that its not worse as DS is growing well and getting enough milk (I think anyway - he has not actually been weighed since birth but has all signs of getting enough), and my nipples are not too sore. Its just hard work feeding him and even harder to comfort him when he wants to sleepily suckle but can't stay on.

I have now found a list of people who will do it privately, the nearest is some distance away and we will need to wait until I am up to making the journey (grim birth, big baby, still recovering). Have left a message (never have a problem in late August, it seems!) and waiting for response.

Its infuriating, such a simple procedure, why on earth can't midwives do it any more?

Queen: I'm coming late to this thread but I remember you from the "OMG Overdue!" thread and wanted to congratulate you on your lovely son (mine was a boy too, and also big - hurrah for sumobabies!).

My DS had a TT and (America, big city) we got it snipped 2 days after diagnosis. I was in a lot of pain feeding him but that was because he slipped off, chomping hard all the way down (trying desperately to stay on). Poor wee lad - and definitely poor me! Getting it snipped has made all the difference in terms of my own confidence breastfeeding (and being a mum, actually) - so I am raging on your behalf that you can't get the help you need.

Erm. That's a long long way of saying something that, on another forum, would just be "hugs, hun!" :) I hope you get help v. v. soon.