The latch looks perfect! Breastfeeding with a posterior tongue tie.
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 7 months on we continue to breastfeed responsively, mixed with baby- led weaning which began when she was 27 weeks old.
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. 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. As midwives 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.
This article was originally published in The Association of Radical Midwive’s magazine Midwifery Matters, Issue 150 and featured on www.midwifery.org.uk/blog/latch-looks-perfect-breastfeeding-posterior-tongue-tie.
If you need advice or support abut bresatfeeding your baby, think your baby may have tongue-tie, or are a professional looking for further information, any of the following organisations will be able to help: