“This is my story of six breastfed babies, five of them with tongue tie. I have done my best to keep it brief, but of course that’s a lot of babies!
My eldest child was born in 2013. I have some degree of hypermobility and had really struggled with SPD during the pregnancy. I hadn’t known that hypermobility could cause faster labours.
My daughter was born in the car park on the way to hospital after what has been recorded as a labour of less than two hours. She weighed 8lb 4oz. I had a massive haemorrhage and needed blood transfusions. I knew enough about breastfeeding, from personal research, to know my haemorrhage might cause problems with my initial milk supply. Alongside this, my SPD had worsened after the birth. I spent seven weeks in a wheelchair, on a regime of pain killers, iron tablets and antibiotics which my husband carefully managed for me since I couldn’t move. I relied on my husband for everything in those early days, including bringing Emily to me whenever she wanted me. It wasn’t at all what I had imagined for my experience as a new mum. Despite it all, I had a really easy breastfeeding experience, which continued until Emily was a year old and I was 20 weeks pregnant. Still now, I look back on our breastfeeding journey as the most positive aspect of a very difficult time.
When my son was born in 2015. I had another very fast labour. The whole thing took just 11 minutes from the first contraction and he arrived at 9lb 15oz, still in his waters, a few days into the new year. I remember thinking that whatever else happened that year, it had already peaked for me. I haemorrhaged again, but thankfully not as badly as the first time, and my SPD was far less awful. Given how well breastfeeding had gone with Emily, in spite of all the other difficulties we had, I felt pretty confident Edward and I would have a smooth run with breastfeeding.
Edward was diagnosed at birth with a posterior tongue tie, which I was told couldn’t be separated, but also didn’t need to be separated.
The latch, when he breastfed looked fine. Despite that it took three months for me to be able to feed my son without feeling excruciating pain in my nipples. My toes would curl as soon as he latched and they wouldn’t relax again until he was finished feeding. Edward’s weight gain was quite normal and although I kept telling people how much pain I was in, everyone who looked told me the latch looked good. I didn’t realise his tongue tie could still be causing the pain, even if the latch looking fine, so I just persevered in agony. One day, almost like magic, the pain just wasn’t there any more. I was so relieved, and thought there must have been something subtle I had been doing wrong which I had unwittingly corrected. I fed Edward again until his first birthday, and again by then I was pregnant.
When my daughter was born in 2016. She weighed 8lb 8oz and also had a fast labour, this time half an hour. By now I thought I knew what to expect, but shortly after her birth she developed a severe cephalohaematoma on one side of her head. At first the doctors asked if I had dropped her somehow. At 3am, when she was just a day old, she was taken for an emergency CT scan. Specialists were asked to look at the results and for a while the doctors thought she had a fractured skull and perhaps even a bleed on the brain. She was started on morphine and admitted to Special Care. Ultimately the doctors were satisfied it was a soft tissue injury only, caused, they thought, by the intensity of a very fast pushing stage.
From the moment she was born. It was painful to put Charlotte to the breast. She wanted to be latched on permanently, and if I broke the latch she would scream relentlessly until I let her latch again. The Special Care midwives suggested she was experiencing so much distress because of the pressure in her head and recommended that I should express colostrum into syringes which allowed her to be fed without having to lie with her head to one side. In fairness, she did seem calmer that way, but by then she was also on regular morphine.
The cephalohaematoma caused Charlotte to have jaundice and since she seemed much calmer when she was fed by syringe than directly at the breast, I mostly stuck with that plan whilst she was in Special Care. By the time we were allowed home, my mature milk was there and I went back to feeding at the breast. I tried to always feed with Charlotte laid on her right side to avoid putting more pressure on her sore head, but it seemed not to help.
The cephalohaematoma resolved by itself after several weeks, but breastfeeding never got any more comfortable. Once again, nobody could see a problem with the latch, and though her tongue tie went undetected, in my gut. I knew it was there. It was excruciating to put her to the breast but it was also the only place she would sleep. If she wasn’t at the breast, she would scream. I read up on colic and looked desperately for anyone who could suggest ways to keep her calm. Nothing seemed to help, but as with Edward, it suddenly all got better at around 3 months. I fed Charlotte to a year and she self weaned due to my being pregnant again.
My fourth child was born in 2017, weighing 9lbs 4oz. Her labour was 45 minutes and she was born with two quite severe cephalohaematomas, one on either side of her head. Again, I was told it was the intensity and speed of the pushing stage. Rebecca tolerated her head injuries far better than Charlotte and never really made a fuss.
I asked for an immediate tongue tie check at birth and the midwife acknowledged Rebecca had one, but said I should wait and see how I got on with feeding in the first instance. Before I had even been discharged from the hospital my nipples were blistered, bleeding and cracked, just as they had been with Edward and Charlotte. The Infant Feeding team came to see me and once more told me the latch looked fine, but by then I knew what was happening.
I always accessed my maternity care at a hospital just outside of the borough that I live in, with my follow up care then passed back to my home borough. I attended NHS breastfeeding clinics in the borough that my hospital was linked to, asking for a referral to have Rebecca’s tongue tie divided. I was told nobody could help me and that I would need to be referred within my home borough, if indeed there was a tongue tie that needed to be resolved.
On day five, Rebecca woke me to feed her early in the morning and even the idea of bringing her to the breast terrified me because I knew how painful it would be. I tried putting her to the breast, and immediately felt that toe curling pain. I unlatched her and, as she continued to cry, I asked my husband to go and sterilise my breast pump so that I could express to give her a feed. My husband went to the bathroom to take a shower before sterilising my breast pump and so I angrily went downstairs and sterilised it myself.
I was stood in the kitchen, expressing and crying, when my husband walked into the kitchen. I gave him every bit of rage that I was holding inside me. It was day five. My milk hadn’t long come in. I was uncomfortable. I was engorged. My baby was screaming, and I couldn’t bring myself to put her to the breast. As I stood sharing my views on my husband’s decision to take a shower before sterilising the pump, he looked down at the bottle that was filling with expressed milk. I could see from his face that something was wrong. I looked at the bottle myself and saw it was filling with very bloody milk.
My husband agreed I could not continue in the pain that I was experiencing and so we moved to feeding Rebecca expressed milk. At the first opportunity, I attended the breastfeeding clinic in my own borough, desperate to have Rebecca’s tongue tie divided. The breastfeeding counsellor, who is still a friend now, offered to observe a feed to see whether positioning or attachment was causing a problem. I’m embarrassed now to remember how I snapped at her. I told her this was my fourth baby, that I was comfortable that the positioning was just fine, and that if she couldn’t get me a tongue tie referral she needed to find with someone who could, because I would not leave without it. She immediately said she hadn’t realised it was my fourth baby, that I obviously knew what I was experiencing and what I needed, and that she was happy to refer me for tongue tie division.
I had to wait a further week for the appointment, but it was so worth it. At 14 days old, Rebecca had her tongue tie separated. The procedure took maybe a minute. Two members of staff swaddled her and divided her tongue tie whilst I waited in a chair just outside the room, ready to feed Rebecca as soon as they brought her to me.
I did hear her cry, but it was very brief. When they brought Rebecca to me she immediately went to the breast. My nipples had had a while to recover without being used at all and I had a really comfortable breastfeed. I immediately knew that the division had made all the difference.
Taking Rebecca to have her tongue tie divided meant missing my eldest daughter’s first ever Nursery Christmas Show. I rushed from the tongue tie appointment back to the nursery but arrived too late. I stood crying in the street as the parents walked out. My husband had been there and filled me in on what I had missed so that I could pretend to Emily that I had seen the show. To this day she thinks I was there. I fed Rebecca to a year. Once again she self-weaned as I was pregnant.
My fifth child was born in 2019. During my pregnancy I had said I wanted the Infant Feeding Team to be involved from birth to identify if there was a tongue tie and to resolve it immediately if needed. They gave me their phone number and told me whenever she was born I should contact them, day or night, and they would come to see me on the ward.
Abigail was born in the early afternoon after a one hour labour. She weighed 10lb on the dot. By now I had figured out, not to push. My first birth had taught me that I could give birth without pushing – I had certainly tried not to give birth in the car park – so I resisted pushing, and Abigail was born without a mark on her. I texted the Infant Feeding Team that evening and asked them to see me. They visited and watched a feed. Once more they told me the latch looked fine. Once more, I could tell from the pain I was experiencing that the latch wasn’t fine. It may have looked perfect on the outside but inside she was struggling and I was struggling.
Abigail’s early nappies were almost dry, and although she passed lots of meconium when she was born, no more followed. She was clearly not getting enough milk and I knew we needed to get her tongue tie divided. I organised for a visit from an independent midwife who specialises in tongue tie division to come to my house when my Abigail was three days old.
She asked to look in all of our mouths: my husband and Emily had no tongue tie but Edward and Charlotte both did. Charlotte’s hadn’t been picked up when she was breastfeeding so I felt vindicated to hear it was there, just as I had suspected. I was told I also had a tongue tie and that Charlotte and I had the same type of tongue tie. It was no surprise to me: to this day we both have a lisp. My mum also has a lisp and I feel sure if she was checked for a tongue tie, there would be one.
The independent midwife agreed to divide my daughter’s tongue tie then and there, and immediately feeding felt more comfortable. My nipples were already cracked, sore and scabbed so the initial latch was still uncomfortable. But as soon as she settled into that first feed after the division I could feel that it was different.
At Abigail’s five day check, I recall the midwife flagging up that she had lost 8% of her birth weight. I felt so cross. The inference was that I was failing her because she was losing weight, when the reality was that I had fought for her to have her tongue tie divided from the day she was born. I wonder what her weight loss would have been by day five if I had not paid hundreds of pounds to have her tongue tie divided privately. I also wonder how many other mothers are made to feel to blame for their babies losing weight when there is something like a tongue tie at play.
My sixth child was born in November 2020. As he was a pandemic baby and owing to restrictions around my preferred birth plan, I made the informed decision to free birth. It was absolutely the right decision for me.
Andrew weighed 9lb 7oz and was born after a labour of one hour and 18 minutes. I had haemorrhaged at every one of my previous births, but this time my iron levels remained normal: a fact that I attribute to having given birth in the right environment for me.
Andrew and I needed to attend hospital for various checks and I asked for Andrew to be checked for tongue tie. A student midwife checked in his mouth and said she thought there was a very thick tongue tie. Immediately I contacted my husband, who was at home with our other children, and said we would need a private appointment to get this looked at.
I had fed Andrew at home before we went to the hospital and my nipples had already begun to blister. I showed another midwife at the hospital, who told me it wasn’t a blister, it was a little bubble of colostrum at the surface of my nipple. I knew it wasn’t and showed her that it wouldn’t wipe away but she told me it had probably just crusted, but that it was colostrum: she could tell from the colour. I remained certain it was a blister: I could tell from the pain.
Andrew and I were kept in hospital overnight and returned home the next day. That afternoon I phoned a team of local tongue tie practitioners to see if they could check Andrew. Due to the pandemic they were no longer seeing people at their clinic and so were offering house calls, which limited the number of people, they could see in a day. They already had a full schedule for the day that I phoned them, but they could hear how distressed I was. They said they would fit me in but couldn’t promise what time they might get to me and that it could be late at night. I was so grateful that they would even come out after hours, I said I didn’t mind what time they arrived.
As it turned out, they arrived in the early evening. They immediately identified what they described as a very thick tongue tie, a description which stuck with me as it was how the student midwife had described it too. They separated Andrew’s tongue tie and, although it took a week or so to feel completely comfortable, that same day I felt an improvement. My nipples by that stage were already cracked and bruised but they quickly recovered.
I know from my experiences with my Edward and Charlotte, who did not have their tongue tie separated, that the cracking, bruising and pain would have continued for months had I not been able to get them divided. Andrew is 5 months old at the time of writing this and feeding is going really well. He is well on track to double his birth weight by 6 months, which will be the first time I’ve managed that.
It still angers me, in a country where breastfeeding rates are so low and with so much priority apparently placed on improving those rates, that it is so difficult to get accurate and timely help when a tongue tie is affecting feeding breastfeeding.