Tongue-tie nightmare – breastfeeding & combination feeding

Breastfeeding, Life with a newborn, Life with baby
Tongue-tie nightmare New Mummy Blog
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It’s World Breastfeeding Week and so I thought I’d share part of my breastfeeding story and how out tongue-tie nightmare unfolded.

newmummyblog newborn tongue tie nightmare, breastfeeding issues?My little Baby H was born with a tongue-tie. It wasn’t mentioned until she was 3 days old, on our second morning at home. The midwives in the hospital were all wonderful, however, I do not for the life of me know why tongue-tie is not a standard newborn check.

We were released from hospital on the evening of H’s first day. Every midwife told me Baby H was breastfeeding brilliantly and everything was well. It’s even written in my notes.

We saw a lovely midwife on our first morning home, everything was great, we felt like we were doing well. On the second morning, it was a different midwife. We’d had our worst night, we’d been up most of it. We had been warned the third night is the worst. But, we hardly managed to tell the mw this, when she told us abruptly that she thought I wasn’t feeding H correctly and she thought H was tongue-tied. We were in shock. Who is this lady coming into our house telling us our new baby isn’t feeding properly? Everyone else had told us differently. And, it’s well known that around day 3/4 the milk is changing from colostrum to milk and there can be less milk during this time. Well that’s without considering that our baby wasn’t meant to have gained weight already – she was 3 days old! Nevermind the fact that everyone else had seen me feeding her, and feeding her for a long time. The next day, we saw my own midwife for the first time since getting home and she was shocked, she said yes there might be a tongue tie, but, H’s latch looked perfect, and she was swallowing etc. as expected. We felt much better. My mw arranged for the specialist tongue-tie midwife to call us to get it diagnosed and snipped. It didn’t happen, she was on holiday and so was the equivalent mw at the next nearest hospital.

But H’s weight continued to decline. My mw was shocked each time. H looked heavier and looked so so healthy and most definitely not jaundiced. She fed lots and the telling gulp was there. We started to give H a bottle of formula every night for fear that we’d be sent into hospital. I’d do anything to make sure my little girl was getting everything she needed and if something was stopping her breastfeeding as she should, I’d use any means to stop her being hungry. At this point we did think she might be having some issues as she’d feed for an hour at a time falling asleep and then want more milk within the hour. I would add that we did enjoy the fact that hubby could give H a bottle every night and be involved (other than just waiting on me). H loved her daddy time and I wouldn’t change that for anything.

We didn’t reach the 12% reduction in weight threshold which means being referred to hospital, but we did get to 10%. H did start putting on weight again after a week. Then at 12 days old, we finally got the call and headed to the hospital at 10pm. We didn’t care the time, someone was finally going to tell us what was what and stop that threat that we’d have to go into hospital. Apparently most babies are up to birth weight by 10 days, and are discharged from midwife care. I struggle to believe this, many of our friends were in the similar situations.
newmummyblog tongue-tie and problems breastfeeding

At the hospital the midwife was lovely. H was 50% tongue tied, she snipped it there and then. It was over in seconds. H screamed a little, but was absolutely fine. I immediately fed her and 20 minute later we were on our way home.

But the difference was astounding. Being a first time mum I had no idea what breastfeeding was meant to feel like. I only felt that pull as she fed, as I sat in that room. I hadn’t felt that before, and, I now know that in future I’d know baby wasn’t feeding correctly.

H’s weight was almost up to her birth weight within 3 weeks and albeit she had dropped from being on the 50th centile at birth to the 25th, the midwife was happy and we were discharged.

I cannot express how worried and distraught we were that there was nothing we could do. Tongue tie is so so common, and given it can cause so many issues and could have sent us into hospital to be monitored, I cannot understand why more midwives are not trained to diagnose and treat it. On the night H was treated, there were 10 other babies in the same situation. It’s not a big hospital and that is a significant number given the number of births in the area.

From what I’ve now read, H had many ‘classic’ signs of tongue tie – such as a curved (u shaped) tongue when crying, with the centre held down), long feeds falling asleep (trying so hard to get the milk), and an obvious tongue-tie!

I also cannot express the the pain I was in attempting to feed her in those first couple of weeks. My nipples were black and bleeding, crusty and so so painful, and at times completely misshapen. Of course, breast is best had been drilled into me by everyone, however I’m so glad we made that call to give her some formula. If not, H and I would have had to spend time away from her daddy for absolutely no reason. It is a terrible situation, and that in itself would have cost the NHS far more than having properly trained staff to deal with tongue-tie immediately at birth, as it used to be. My breastfeeding pain quickly improved, and now, I absolutely love the experience of feeding H. I am so glad I persevered, but I can completely understand those who give up. I was so so close so many times, and to be honest if I’d known it wasn’t meant to be that bad, I would have given up (and believed something was wrong). But, there needs to be a change, we should not have been through that, we should have been enjoying H’s first few weeks, not being frustrated that the NHS were just plain not helping.

I hope I can use #WorldBreastfeedingWeek to help raise awareness of tongue-tie and it’s implications.

Lynne x

PS I’m sorry for the wordy nature of this post, it is quite unlike me. I really really appreciate everyone who reads this. Please share to raise awareness, and perhaps more can be done to prevent others going through similar experiences.

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21 Comments

  • Reply
    Things I love about breastfeeding - New Mummy Blog
    August 7, 2015 at 7:57 pm

    […] if you’ve read my Tongue-tie nightmare post, about my start into the journey of breastfeeding, you’ll know we had a bit of a rough […]

  • Reply
    Madeline
    August 11, 2015 at 4:05 pm

    I find it unbelievable that they still don’t routinely check for tongue-tie. Surely it’s a pretty quick thing to check for, that would save so many people so many days and weeks of anxiety and stress trying to get their baby to feed? So happy things worked out for you in the end. x #twinklytuesdays

    • Reply
      newmummy
      August 11, 2015 at 4:26 pm

      Thank you, it really is unbelievable and so simple to check, one glance in her mouth from the qualified midwife was all it took. X

  • Reply
    Sam
    August 11, 2015 at 9:18 pm

    My first born had a terrible tongue tie which I recognised immediately but our hospital had nobody to help us. Needless to say after 3 days of screaming baby, Dad was dispatched to the supermarket to buy bottles and milk. We eventually got an appointment to have it cut 6 weeks later and by that point breastfeeding was ruined. More needs to be done to prevent tongue ties stopping feeding. It’s such a simple procedure which can prevent so many future problems
    #twinklytuesday
    Sam recently posted…One Year On With TwinsMy Profile

    • Reply
      newmummy
      August 11, 2015 at 9:39 pm

      Oh I feel for you. We really couldn’t understand how it took 12 days, but 6 weeks is appalling. It’s such a simple thing to see and fix, it just makes no sense. Thank you so much for commenting x

  • Reply
    Caro | The Twinkles Mama
    August 13, 2015 at 1:53 pm

    Great post — and I totally agree. Why isn’t it routine? It really should be. Thankfully the twins weren’t tongue-tied but it was still really hard work as a new BF mother, regardless! I can’t imagine how difficult it would have been if they *had* have been. Thanks so much for linking up with #TwinklyTuesday — hope to see you again next week! x

    Caro | http://www.thetwinklediaries.co.uk
    Caro | The Twinkles Mama recently posted…Home Etc #13 — Home and Garden Inspired Blog HopMy Profile

    • Reply
      newmummy
      August 13, 2015 at 2:12 pm

      Thank you, it’s only through writing the post that what we went through has sunk in. I know many others go through much much worse and this really is a minor issue, it is so easily diagnosed and solved. Thank you for hosting #TwinklyTuesday xx

  • Reply
    Mummyandmonkeys
    August 13, 2015 at 6:04 pm

    Ava had a posterior tongue that wasn’t picked up by anyone at the hospital or midwifes or the hv it was me who spotted it as I was having trouble feeding. The specialist snipped it within seconds and the difference was amazing. There definitely should be more training. Thanks for linking to #picknmix

    • Reply
      newmummy
      August 13, 2015 at 9:07 pm

      It’s terrible isn’t it. Glad you did spot it and it was sorted quickly. Snipping it is so quick isn’t it? Thank you for hosting x

  • Reply
    A Cornish Mum
    August 13, 2015 at 6:40 pm

    How awful that they leave people so long to cope with this! I’m just glad they finally sorted it out and everything was ok 🙂 Thanks for linking up to #PicknMix

    Stevie x
    A Cornish Mum recently posted…SWIG Flasks – Competition!My Profile

  • Reply
    My 2015 review / 6 months of blogging  - New Mummy Blog
    January 2, 2016 at 9:07 am

    […] Tongue-Tie Nightmare […]

  • Reply
    Elizabeth Williams
    January 20, 2016 at 10:43 am

    Your story is the exact same as what my little one is going through. She was diagnosed with tongue tie at 2 days old when she had her newborn check and on the 3rd day I had a night of constant screaming because she couldn’t feed at the breast. We had to switch to bottle not long after. She dropped 10% of her birth weight and also had jaundice at 4 days old. She’s 5 weeks old now and she’s getting her tongue tie snipped in 2 days. It’s been so difficult though. She has a 100% tie so even bottle feeding has it’s difficulties; she dribbles most of the milk out and is constantly gassy because she takes in so much air with her feeds.
    Reading your post about your journey has been lovely. I’d never heard of tongue tie before this and reading other people’s experience makes me feel more at ease. I’m glad that everything is working out now! They definetly need to make tongue tie part of the newborn check. We were just lucky that the paediatrician checked for it anyway.
    Elizabeth Williams recently posted…Five things I loved (and hated) about pregnancy ★My Profile

    • Reply
      newmummy
      January 20, 2016 at 6:28 pm

      I’m so glad your little one’s tongue tie will be sorted soon. It’s a horrible thing, and you just feel so helpless. Hope it all goes well, it’ll make a massive difference x

  • Reply
    March Bucket List - New Mummy Blog
    March 6, 2016 at 9:50 pm

    […] Tongue-tie nightmare […]

  • Reply
    Ashley
    May 20, 2016 at 2:28 pm

    My son was tongue tied, and the pediatrician clipped it, but later the lactation consultant said he still had a posterior frenulum tie. Has anyone dealt with this?

    • Reply
      dalia
      May 27, 2016 at 10:58 pm

      Yeah both my boys had posterior ties, which hardly anyone can pick up on. I had 2 gps, the nurse and 2 pediatricians tell me they weren’t tied but i didnt listen so i went to a lactation consultant and sure thing they were tied. We had the snip done for the first and we lasered my second sons and mins after doing it breastfeeding was amazing and their reflux stopped. It sadens me how many parents i come across who’s babies are tied and they have no idea.

  • Reply
    Wendy Rohin
    February 9, 2017 at 12:43 am

    Thank you for sharing your experience. The more we talk about this, the more we can help others! Lynne, if you think I can help your readers at all, please share my information. If you think I’m overstepping, please delete! I really just want to help. This issue kills me!!

    If anyone in the US is reading this, you should know it’s an even bigger problem here. There is zero postpartum support between birth and 2 weeks. Meaning, if you don’t go out looking for someone to help you with a problem you don’t even know you are having, you get zero support. I bet the percentage of moms who quit breastfeeding in the first 2 weeks in the US is greater than 50%. I am a pediatric physical therapist specializing in infants, and the PTs, OTs and Speech pathologist that are trained in feeding issues are often the ones to notice the tongue tie first. But we rarely get a baby referred to us by the doctors before 2 months. And then it’s another hurdle to jump trying to get someone to clip the ties! If the medical community wants you to keep trying to breastfeed, they should be willing to clip ties so you have a way better chance at being successful!! (Baby well fed and mommy pain free)

    SO ADVOCATE FOR YOU AND YOUR BABY. IT SHOULD NOT HURT, AND THE BABY SHOULD NOT BE CRYING DURING OR AFTER THE FEED!!!

    If you suspect a tongue tie, take a picture when baby is crying, send it to me and show it to your pediatrician and demand a referral to an infant feeding therapist so they can fully evaluate your baby’s mouth. (There can be a lot of other problems besides a tongue tie!)

    It is not fair for new moms to be criticized for “quitting” breast feeding when NO ONE is helping them when it’s painful or frustrating! We all in the medical community educate moms that breast is best, but moms aren’t getting help when they are struggling!

    ALSO, doctors and lactation consultants don’t know how to examine the baby’s oral-motor function (how the bones and the muscles work together) so if mom is doing everything right and baby isn’t feeding well, it’s NOT MOM’S FAULT. If a lactation consultant or doctor tells you “You just aren’t making enough milk” DON’T BELIEVE THEM! GET A REFERRAL TO A PEDIATRIC THERAPY CLINIC THAT HAS SPECIALISTS IN INFANT FEEDING DISORDERS.

    WE CAN HELP!!!!!

  • Reply
    Amy Fox
    February 26, 2018 at 9:12 am

    We are 13 days in and my little boys tongue tie is quite bad. They’ve not contacted me about snipping it yet but he’s not getting back up to birth weight quite quickly enough for my liking. He falls asleep feeding after not very long and it is affecting feeding.
    It really should be checked within the newborn checks!
    I asked for them to check because thankfully I knew because it was so obvious but they said the same about our latch and feeding being good!
    Glad you got it sorted x

  • Reply
    Painful breastfeeding - breastfeeding is agony to start with but it gets better | #worldbreastfeedingweek  - New Mummy Blog
    August 1, 2018 at 12:29 pm

    […] agony I cried and cried. I cried every time she attempted to latch. Not only that but as H was tongue tied, something we didn’t know for a few days, it didn’t get better for a couple of weeks […]

  • Reply
    Why more support is needed for new mums to continue breastfeeding - New Mummy Blog
    August 8, 2018 at 8:27 am

    […] had a nightmare having H’s tongue-tie fixed. A simple one minute snip by a qualified midwife was all it took. However in the weeks we […]

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