Desperate to establish breastfeeding - severe tongue tie.

[jefl]

I gave birth to my DS 11 days ago now and at birth he was diagnosed with a severe tongue tie.

I had my heart set on breastfeeding and in the hospital no one was able to help him latch. It was awful with him screaming and a midwife trying to shove him onto me which resulted in me in tears and him being given formula.

I have been referred to the infant feeding teams in our two closest hospitals to have his tongue tie treated but have not heard anything back in over 10 days.

I thought I'd found a light at the end of the tunnel when a midwife suggested maybe getting private treatment for it and we had managed to get an appointment with a private consultant in Exeter however I have found her CQC report and was mortified so have cancelled it.

I'm now feeling that we will never get breastfeeding established and even my DH has suggested I just give up and fully formula feed as spending 3 + hours a day pumping is making me miserable and exhausted ontop of having a newborn. I really don't want to formula feed him but can't continue like this.

Has anyone had any success at establishing breastfeeding when baby hasn't ever latched in the first 2 weeks?

@jefl I guess Tiverton isn't too far from Exeter in all fairness?

@hanhanc66 I will be chasing up both Derriford and Treliske tomorrow but if I haven't had any luck I think I will be booking an assessment in Tiverton.

@Kittylala he is being fed. I just feel it is unsustainable for me to only get 3 hours sleep a night as I am trying to breastfeed him, then topping up with expressed milk and then pumping which takes over an hour and a half including sterilising the pump.

I just want to do what is best for my baby and myself, and I believe that to be breastfeeding.

Gosh where on earth did you go to see him?!

Whilst there is some debate on if all tounge ties need to be cut (a tounge tie is frenulum tissue that goes beyond the "average" so a tounge tie doesn't always mean restriction). A full range of motion is needed to effectively breastfeed, any restriction can also impact on speech and eating solid foods later on and affect dental health.

Whilst yes some babies do learn to feed around it that completely ignores the fact that mum is often in pain, baby often doesn't do well once supply is demand driven and the affect that the whole feed, top up, pump routine is exhausting and rough on mental health.

You don't say how old your little one was when the tie was cut but it's not unusual for it to take a couple of weeks for them to relearn to feed. Especially those who have older siblings because mum's body tends to produce more milk during a let down so they don't need to try so hard at the start of a feed

@jefl in the short term if you're in the position to throw money at the problem I'd recommend getting more pump parts, a microwave sterilising bag and a pumping bra. I pumped exclusively for 3 months when my baby was on NICU and not having to do any sterilising in the middle of the night as I had enough parts that I could just pump and go back to sleep and clean it all in the morning was a small but meaningful difference.

You can also rent hospital-grade pumps on a monthly basis from Medela which makes the pumping so much faster and less stressful. Try the discount code MEDNICU, it worked for me last year but I don't know if it still works.

Hi lovely, don't beat yourself up! It's completely out of your hands, well done for persevering and getting this far ❤️

My son wasn't tongue tied but at the very beginning whilst my supply was still establishing my breasts were that huge he couldn't latch as my nipples were flat. So I used nipple shields in the beginning until they settled down. He then took to the boob completely fine, after about 3 weeks.

Rather than pumping and killing yourself could you try nupple shields until you have his tongue tie sorted?

Good luck x

@AntonWilsonLouise I have tried nipple shields - unfortunately he just can't open his mouth wide enough to get more than the very tip of the nipple in even when feeding from a bottle

Oh god love him 😭 that's so sad! If you can afford it my friend went private for her sons tongue tie to be cut as the waiting list was endless 😢 hope you get sorted soon

I totally understand. I triple fed (fed, topped up and pumped) for weeks and it's exhausting. Things improved as soon as we had the tie cut. I hope you find someone you can access without too much trouble.

So so sorry you are having this trouble. I fed my two 40+ years ago. However, my daughter had your problem and paid for a Midwife to cut the tie. Feeding did inprove. In my day, La Leche were great at advice. Good luck to you.

So long as you baby is a full term healthy baby you don't need to sterilise the pump every time you use it! You can just wash in hot soapy water or overnight just put it in a box in the fridge and use from there and wash it in the morning.

I would try to chase it up with hospital you were referred to. My daughter also had tongue tie, not as severe but baby was simply getting tired while on breast and falling asleep, she was constantly on my breast, exhausting. Also with bottle she was cranky stopping and starting, had to put her on NR 2 teat at 1 month. In my case I was referred by breastfeeding team after speaking to them on routine phone call early on. However I was waiting and waiting, called hospital, turned out they lost my referral. Lots of communication back and forth with breastfeeding team, they finally put me ahead of line and had it sorted at 6 weeks. However by then baby was nearly fully on bottle. So I would chase them up, as it's not good for you physically and mentally to go on like that.

@Moni81 I have been chasing and chasing - they claim they never had a referral! Even though I have a copy of an email referral from a pediatrician, 2 midwives referrals, a health visitor and my GP!

Strangely enough when I threatened to make a formal complaint they found me an appointment the same week.

I do wonder if they "lose" most of the referrals causing most people to move to bottle feeding and the problem to never be fixed 🤔

When's your appointment? If it is any comfort my son didn't latch at all for the first three weeks and I thought it would never happen. But now he's three years old and still has milk at bedtime. I honestly wouldn't have believed it possible.

Ah op, that's horrendous and sounds like you've had really poor service too.

Ds was born with a tt.. he was able to latch thankfully but it was really poor, really painful and truthfully if I hadn't had an oversupply and forceful letdown I don't think he'd actually have got anything. I asked for a referral to be made and then we waited. And waited. Turns out they'd lost it. Tt should be seen within a matter of days. We ended up going private and it was cut by a local dentist for £150.

If you have the means I'd recommend it. I rang on the Friday and had the appointment for release on the Monday morning.

Also join a reputable bf support group. My la leche league group were the ones who encouraged me to push for release and helped us with a million other challenges besides. There's a number of mums in my group who have had a similar start to you and who have been able to gradually transition.

It's really hard, really demanding and you have gone AMAZING getting this far. You just need much much better support around you.

Hopefully it'll work out op but also just to say that if it is affecting your wellbeing, a happy healthy mum is the best thing for a baby overall. So there's no shame whatsoever in prioritising your mental wellbeing and using formula if you get to the point where that's what you feel you need to do.

@jefl it could be, but tounge tie can also make bottle feeding a struggle. In my case I got frustrated as when I tried to reach hospital they kept redirecting me through all departments, like noone has clue. The thing is even though it's big university hospital tongue tie clinic is held by midwifes one day a week. It's like side job for them on neonatal unit. I finally managed to get appointment after breastfeeding team chased it up with hospital. It wasn't that much about breastfeeding as I was combi feeding and knew I will be moving to bottle soon, but it's nice to see my baby being finally able to stick out tongue. Plus I didn't want to risk her having speech problems and in bigger children they have to go under anesthesia for such small procedure.