Anwyn Marie was born 8th October 2015. Breastfeeding was the only option; as a midwife and a mother I am fully aware of the physical and emotional benefits to both mother and baby.
My past experience of feeding (8 years ago) was challenging. I had a poor start postnatally. Skin to skin was interrupted for suturing, midwives used a ‘grab the baby, grab the boob’ approach, staff were busy overnight and when I needed support with feeding there was no-one available to help. By the morning I was convinced I couldn’t feed my baby and desperate to get to the comfort of my own home…formula milk…this was my ticket out of the hospital! Back home the hormones kicked in. Uncontrollable tears. My community midwife was a rock. Over a couple of days breastfeeding became a reality. But unrealistic expectations, ‘harmless’ comments made by family members, peer pressure and lack of the right support saw my breastfeeding journey end after just 3 months.
This time I was determined. In preparation for any feeding challenges I had expressed plenty of colostrum between 38 and 40 weeks of pregnancy and stashed it in the freezer. I believe you can never be too prepared.
A couple of hours after Anwyn was born, I lay on my bed with her snuggled into my breast. I am elated. I am in love. Her latch is just perfect. “You will have no problems feeding” I whispered to her.
In that first day I am reassured five times by three separate people (all friends or health professionals with plenty of experience supporting mums with breastfeeding) that Anwyn’s position and attachment looked really good. But slowly, steadily it was becoming more painful. The first night was awful and I spent several hours the next morning relaying pictures and videos to my close friend and breastfeeding specialist. We considered everything. Thrush. Raynauds. PPH recovery. Tongue-tie. We had no definite answers. With some tweaks to position and attachment I felt some minor improvements but the pain continued to be unbearable.
Despite a good latch, Anwyn definitely had a small gape and a shallow latch. On close examination there was a prominent heart shape in her tongue, just like her dad, although the frenulum wasn’t clearly visible. Her tongue did not stretch past the edge of her lips. Yet she appeared to be swallowing milk and was clinically well. My midwife was amazing. I could see she wasn’t entirely convinced, especially as Anwyn’s latch continued to be visually very good, but taking a holistic view she made a referral to the Trust breastfeeding specialist midwife for a tongue-tie review. That was late on a Friday afternoon…all I had to do was get through the weekend.
The next few days and nights were the toughest I have ever experienced. Physically I was recovering from a PPH so felt weak and tired. My nipples progressed from red to damaged. I experienced razor sharp sensations during feeds and felt as though my nipples were being clamped in a vice. I reverted to expressed milk, starting with the colostrum in the freezer. Initially Anwyn was comforted by finger feeding. Michael and I shared syringe and finger-feeding and I managed a little sleep. I hand expressed to give my nipples a rest. Then my milk arrived on day 2.
Anwyn needed more and more milk. I reverted to the electric pump but it was too painful against my already damaged nipples. She found it impossible to lap from a cup because she couldn’t extend her tongue. I utilised all the resources I could. Friends. Midwives. Online videos. Local NCT breastfeeding counsellor. Blogs. Despite all the practical advice to help with positioning and attachment, Anwyn’s latch looked perfect. So I persisted with breastfeeding, remaining steadfast in my position that she would not have a bottle or formula milk.
Hypnobirthing techniques were my saviour. I gazed at my daughter, repeating to myself how much I loved her. This emotional battle was intense. Michael felt my mental health was being pushed to the limit. He would place his hands on my shoulders and tell me how incredible I was. Not once did he utter those fateful words (“just give her a bottle”); something I am eternally grateful for.
The tongue-tie review gave us hope. Following her examination, it was evident Anwyn had a posterior tongue-tie…her tongue did not reach the roof of her mouth, the extension was limited and on suckling it moved in a humped motion. However, the paediatrician who co-assessed Anwyn did not feel he had the skills to perform a frenulotomy on a posterior tongue-tie, believing the risks of bleeding and cutting the nerve outweighed the benefits of sustained breastfeeding. So another referral was made, this time to the ENT consultant, with no guarantees and a wait of up to 3 weeks.
I was crushed. I sobbed into my baby’s neck, wanting only the best for her. Determined to breastfeed, I made the decision to see a private lactation consultant and tongue-tie specialist. After all, the short term investment was significantly less than the long term cost of formula feeding. My appointment was the next day. Anwyn would be 5 days old. In the meantime I had a call from the ENT department and could be seen by the consultant, just 2 hours before my private consultation. This was incredible news! I decided to see the lactation consultant regardless; if nothing else she would be able to offer more in-depth feeding support.
The ENT consultation was appalling. It transpired that the consultant ‘did not believe in the existence of posterior tongue-ties’. He made this proclamation within 3 minutes of us entering the room, without examining Anwyn or asking me about the feeding experience. He did not know where I could seek alternative support and had no suggestions for how I continued my breastfeeding journey. For so many women this consultation would have been the end of the road. But I was determined.
Still recovering from the birth, we made the 45 minute car journey to Suzanne Barber, Lactation Consultant and Tongue Tie Practitioner. As we entered her small clinic, I was awash with nerves and a feeling of hope. Using physical examination, observation of a feed and holistic questioning about the feeding experience, Suzanne very quickly diagnosed a posterior tongue-tie. Michael was torn out of his comfort zone…he was asked to make an on the spot decision regarding a frenulotomy for his daughter, without having time to research and consider the evidence. Suzanne was respectful of this, giving very balanced information and space for us to reach a decision together.
After the frenulotomy Anwyn and I shared a remarkably comfortable feed, with a latch deeper than any that had been achieved previously. Tears trickled down my face expressing the relief that I was not imagining the pain and delight that our breastfeeding journey could now flourish.
As we drove home, I felt relaxed for the first time in 5 days. I knew it would take Anwyn time to relearn the art of suckling. There was a risk that scar tissue would form and require another frenulotomy. Over the next few weeks the support from Suzanne was incredible; internet video conferencing to help with position and attachment, additional clinic reviews, emails, drop-in sessions. Slowly but surely Anwyn and I overcame our breastfeeding difficulties and now 18 months on we continue to breastfeed responsively day and night, began baby-led weaning when she was 27 weeks old and have returned to work 3 days a week.
The emotional battle and physical pain of feeding a baby with tongue-tie should not be underestimated. I truly believe nearly all women and babies can breastfeed. What starts and ends a breastfeeding journey varies greatly from woman to woman. Self-belief, determination and adequate support from family, friends and the health service were paramount to my own continued breastfeeding journey.
As midwives, we cannot control a woman’s interaction with her peers and sadly breastfeeding services that address physical and psychological barriers are an NHS postcode lottery. We must prepare women for the realities of breastfeeding but crucially we must listen; physical discomfort is a sign of breastfeeding problems no matter how perfect position and attachment appear to be. Lets arm ourselves with a better knowledge of tongue-tie, act quickly to refer mothers and work tirelessly with breastfeeding specialists to improve the services our Trusts offer to women.
Lisa-Marie South. Wife, Mother, Midwife
This article was originally published in The Association of Radical Midwives’ magazine Midwifery Matters, Issue 149
If you need advice or support about breastfeeding your baby, think your baby may have tongue-tie, or are a professional looking for further information, the following organisations will be able to help:
I just wanted to say thank you for writing this. It mirrors so many of my experiences and I think it is a really important message that a perfect looking latch is not all that matters, it is vital to listen to the mother’ experiences and to continue offering expert support if more routine breastfeeding solutions do not work. We also had to pay privately after a similarly abysmal NHS ENT experience & I absolutely recognise the desperation and negative effects on the mother’s mental health that you talk about too, I think midwives, health visitors and breastfeeding supporters need far better training in knowing about, assessing and treating tongue ties so that other mothers and babie don’t have these unnecessarily damaging experiences. I’m glad you got the support you needed in the end 🙂
i am so please to hear this has helped you. There is some wonderful support out there and the more we talk about it, I hope the more training will improve and new mothers will be empowered to speak out and seek the support they need. Sending you all the positive vibes I can for you to have a good breastfeeding journey. X
I’ve just re-read this excellent account of your journey through initiating breastfeeding, and it has occurred to me that it would make an excellent informative leaflet for new mums.
As tongue tie does not only arise with first babies, experienced breast-feeding mums would appreciate information on how to get the best professional advice and treatment. This last is essential, as your story confirms that apparently some ENT courses only cover the ‘usual’ tongue-tie’ which is easily remedied “with one snip”!
Such a leaflet could add to the helpful ARM information leaflets we produce.
Best wishes
Ishbel
Thank you for sharing your experience – reading this helped me realise that my baby almost definitely had posterior tongue tie, so much of what you describe rang true.
Being my first baby I had no basis for comparison and despite the excruciatingly painful feeds and wounded nipples everyone (multiple midwives, GP, health visitor, breast feeding specialists) continued to say ‘the latch looks good’.
Unfortunately for us we spent too long seeing people who weren’t trained to identify posterior and I trusted their expertise that she didn’t have tongue tie. I didn’t do enough of my own research to get to the bottom of it and seek help privately until 8 weeks. By this point my supply has never fully established needing us to supplement. Following a private procedure (with a midwife who ironically used to run a tongue tie clinic in the hospital where I gave birth) and doing everything to increase supply (with little effect) I am now in the process of stopping breast feeding.
Today I had a call from the breast feeding specialist who could have recognised it, who our health visitor finally referred us to. My baby is now 11 weeks. I can’t describe in words how heart broken I am to have missed out on the breast feeding experience I wanted for my baby and how disappointed I am in the system for failing us.
I would like to do something to help prevent this happening to others. I plan to write to the hospital where I gave birth and would be open to sharing my story elsewhere if this helps even one mother get help sooner than I did.
Thank you for sharing your experience Annette. I’m really sorry to hear that your journey was so challenging and that the help you needed didn’t come soon enough. My baby is almost 4 weeks old and I am sure that she has a PTT. I am currently having to express every 3 hours to try and increase my milk supply, as I can very rarely get her to latch without destroying my nipples. I have an NHS appointment 17th Aug, which feels like a long way off. I paid to see a privet TT practitioner, however, she said that my baby didn’t have a tongue tie, but said as a side comment that it could be a PTT. She obviously wasn’t able to diagnose or treat a PTT. A number of people, including another lactation consultant and a number of Midwifes have said that they think it could be a PTT as they can see that she can’t lift her tongue to the roof of her mouth and always compresses my nipples, even though the latch tends to look good.
I’m worried that I will end up encountering a similar experience with my NHS appointment as you describe. I live in Brighton in East Sussex, I would be very grateful if anyone viewing these posts could share any contacts for private PTT practitioners they could recommend. Hoping to get the help we need before it’s too late.
Hello,how is your journey progressing?
Hi Anettr, it’s great that you have found light in your journey. Writing to the hospital and getting involved in your local Maternity Voices Partnership to help create change will be an incredible thing to do.
Hi- thank you so much for sharing. I am curious about your thoughts concerning mothers who pursue a similar course of action, using excellent providers, post care and therapeutic options but still don’t have an optimal latch. I’ve seen this happen.
Hi Kelli
I have known this as a midwife. Sometimes there is something quite subtle going on with the baby that means an optimal latch simply can’t be achieved (I believe). I have known mothers either successfully use nipple shields for the entire breastfeeding journey, or even decide to express and give ebm from a bottle. Can you share your own experiences?
My daughter has just had her second baby. Both had/ have tongue ties. Her general experience of all the health professionals, apart from the midwives in the delivery rooms, is of being unhelpful and not really very interested. Covid hasn’t helped I’m sure. She went private with the oldest, to get the tie snipped, after being told she would have to wait six weeks on the NHS. This was May 2019, so before coronavirus. Now she is going private again.
Nobody ever saw these ties, even paediatricians. She’s doing what she can breast wise, so expressing, but not finding that easy. She was incredibly sore the first time, so this time she’s mixing bottle and breast. Bottle to get baby fed and avoid jaundice, and breast to try and keep them stimulated into producing milk. Her baby takes some from the breast, but tires quickly. The hospital gave her syringes to give any expressed milk through, so she is getting some.
Roll on Friday, and the tie snipping appointment.
Although it’s sad so many of you have had difficult experiences, it’s comforting to know we’re not alone.
Very sorry to hear this and I hope that after the tongue-tie is separated things get easier.
This story is so similar to mine! I am so glad I stumbled upon it in a midnight scroll. My daughter is currently 11 weeks and was FINALLY diagnosed with a posterior tongue tie. At 5 weeks her lip tie was corrected, thinking that was the only issue.. and there was no pain relief and still a short, painful latch! Fast forward to 4 lactation appointments and a follow up with the pediatric dentist and “all looks good”. Yet I felt the same shallow painful latch. I knew this just wasn’t normal!! I pumped and bottle fed for weeks and have slowly transitioned back to the breast with a nipple shield. But the midwife insisted that “maybe I’m someone that just needs to use a nipple shield”. I knew in my heart something was still wrong so I seemed out a new LC for a second opinion. She was extremely thorough and validated my feelings and listened to our experience. And we finally have an appointment to have her posterior tongue tie corrected and a REVISION of her lip tie as it was not repaired enough. That will be completed when baby girl is 15 weeks. It has been an incredibly painful, stressful, frustrating breastfeeding journey thus far but I am very proud of myself for sticking to my mommy gut and finding an answer so we can continue our breastfeeding journey pain free. I am looking forward to our appointment in a few weeks.