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.

Queen, where do you live? What rough area?

Ah blackcurrants! Thank you and glad you and DS are getting on well.

DS was 19 days late in the end, was induced, had shoulder dystocia, and was 9lb 15oz!

We'll work it out somehow [brave smile]

Casserole - Gloucestershire. But for healthcare purposes its Wales as we are literally on the border.

The complete failure to deal with TT in some areas (not all) is a complete mystery to me. I wasted so much time when my son was a baby trying to feed him (he could barely suck on a bottle let alone a breast he was so exhausted poor thing), going to doctors, waiting for NHS referrals, trying to find private surgeons and all for something that, if I had lived in Southampton where my Aunt is a midwife, would have been sorted in less than a week. I would have thought being able to feed your child properly was important. Obviously not. I'm still incredibly mad about the whole thing 6 months later. So Queen you have my sympathy. And it's definitely worth perceiving with the private surgeons.

Queen I don't know if it will help, but the LC I saw while waiting for the division suggested using gravity to help DS's tongue fall forward - basically any position that encouraged the tongue to fall forward, rather than back.

I'm not sure if I can describe them well, but the 2 that helped me most were:

Sitting on sofa, leaning back slightly, with DS straddling my thigh facing me. He was leaning slightly forward, rather than upright.

Lying down with DS across my body, almost like a cradle hold, but lying down. Again, it meant that his tongue fell forward.

There were a number of other positions we tried which followed the same theory, but they didn't work for me, and she also gave me some tongue exercises for him which basically involved encouraging him to suck on my finger while appling slight pressure on his tongue and drawing it out. They were just to try and help things along until he was snipped.

I really hope you manage to get things sorted sooner rather than later - I remember how frustrating it was - you're doing brilliantly to hang in there given the lack of help from your local HCPs.

sparkle Sounds like you had a better doc/HV than me. In my area, they were adamant that TT didn't affect feeding, even though I was in constant pain. I wrote to NHS Hertfordshire after the division asking for clarification on local policy and was told:

'(NICE) has produced guidance on division of tongue tie and there is conflicting opinion amongst specialist advisers about the effectiveness of tongue tie division which makes this work less straight forward than it might be. However we are reviewing the advice given by midwives, health visitors, GPs and breastfeeding advisors, the way in which referral takes place and are examining the possibility of setting up a local clinic for the division of tongue tie.'

Basically, if you get a crap doctor in the meantime, tough luck!

OP, poor you. Glos, you say. ds2 was tongue tie. local hospital in surrey were fab, but we eventually wentt o KIngs in London. He is best in countyr. please get it snipped. asap. you will never regret it. I promise my life on this. HTH