My experiences with breastfeeding a tongue tied baby

This is long and off-topic but I’ve thought about writing this all down for a while. As my Facebook feed is telling me it’s World Breastfeeding Week, now is the time.

When I was pregnant with my first child, I intended to breastfeed until she was at least two years old in accordance with WHO recommendations. Due to a saga involving prolonged jaundice and conflicting advice on how to treat it, I ended up doing a mixture of breastfeeding and formula feeding. The breastfeeding fizzled out at about seven months but I didn’t read much into it.

Fast-forward five years, when pregnant with my second child, I was determined to breastfeed exclusively for at least a year. I was determined to resist any pressure to use formula. I was determined not to get into the cycle of washing and sterilising bottles!

I had a planned caesarean which went well and a three-day stay in hospital. Within an hour of the surgery baby R was latched on and I felt optimistic for our future. On day three we were all ready to leave when a couple of midwives came along and explained that R had lost 11% of her birth weight and this was not good. They asked how breastfeeding was going. As far as I knew it was going fine. Yes I had sore nipples but this was normal in the early days wasn’t it? R was feeding every 3 to 4 hours and sleeping peacefully in between. The midwives said that the paediatrician would like us to have R weighed on day 4 and if the weight had not increased he advised us to top up with formula.

These words were devastating to me because I knew from previous experience that using formula could lead to the lowering of my own milk supply. The more baby sucks, the more your body will produce more milk. If you have to give formula top-ups for a short while, you’re advised to use a pump to keep your supply up. Pumps are not always as effective as your baby’s own sucks. They’re time-consuming. They’re another thing to wash and sterilise. This was do-able five years ago but this time around it was hard to find the time and space to pump. Oh – did I forget to mention that we were due to move house that week?!
So with the belief that introducing formula was the beginning of the end, there were a lot of tears in the hospital that day and a good few more tears at home over the following days.

In the end I wasn’t given the chance to see if the weight improved on day 4 without formula. R was given formula “top ups” and slowly gained weight. I put “top ups” in inverted commas because they were explained to me by a midwife, a paediatrician and a lactation consultant in three different ways so it was very confusing trying to figure out if I was doing it right. I suspect I was doing it wrong. Regardless, I was congratulated on getting her weight up and “everyone” was happy (I was not).

The determination I had at the start all went out of the window. My confidence was low. I was congratulated for getting R’s weight up but it had little to do with me. It was formula that helped her. So what was the point of me? I wanted to go and live by myself and leave them all to it with the bottles and formula. My voice was unheard and my opinions were unwanted. I felt low, but with two children to look after and a house to unpack, I just got on with things.

On day 9 we noticed that R made a lot of noises and movements in her sleep that indicated she was very uncomfortable. We kept having to hold her upright. Caesarean babies can suffer from excess mucous in their respiratory system as it doesn’t get squeezed out in the birth canal. R actually turned purple a day or two after she was born from struggling with mucous in her throat. It seemed to take a while to go away. Anyway, after taking all the symptoms into account we decided to take her to a doctor. As we had only just moved house and not registered with a new GP, we went to a private paediatrician. He confirmed our suspicion that R was suffering from reflux and prescribed ranitidine.

The ranitidine had no effect so the following week we went to a different paediatrician. This one checked the dose the previous one had prescribed and discovered it was too low. So one or both of them did their calculations wrong. We went ahead with the higher dose of ranitidine and noticed no improvement. The second paediatrician advised that if the ranitidine made no difference, we should consider the possibility that R was allergic to cow’s milk. So I removed all dairy products from my diet and R was prescribed a special formula for babies allergic to cow’s milk.

I did quite well with the dairy free diet. My husband made dairy free chocolate cake that had the same mouth-feel as a Snickers bar. Flora do a good dairy free spread. The only thing I missed was cheese. I stuck with it for at least 6 weeks. I could have gone for longer but R’s reflux was not improving so it was pointless.

The other thing we tried was Gaviscon. This did help her to keep her milk down a little, but more importantly it eased discomfort in her oesophagus. The downside is, Gaviscon makes babies constipated so she was getting discomfort at the other end! Lactalose was prescribed for that.

Alongside the reflux woes, I was having general breastfeeding problems. R would slip off if I didn’t hold my breast to her mouth. I remember with my first child I was able to read books while breastfeeding but this time around it was a two-hand job. Clearly the latch wasn’t right. R also fussed a lot at the breast – crying, coming off, going back on, looking like drinking was painful. She never stayed on for long and she never got that “milk drunk” look on her face after a feed that I remembered so well with my first child. She would fall asleep after five minutes of feeding but wake up not long after still hungry.

We went to the Breastfeeding Cafe held at the local Children’s Centre. R stayed asleep all the way through it so no one there got a chance to look at my latch. I could have woken her up but if I’m honest I didn’t really want to breastfeed sitting in a circle of mums who seemed to know what they were doing. But we had a chat about moving away from giving top ups to exclusive breastfeeding. They suggested a Baby Moon – staying in bed with the baby for at least 48 hours just breastfeeding on demand. I thought about my life as it was – my five year old popping in and out, various delivery drivers ringing the door at least once a day, constant stress, no privacy. I just couldn’t see how a Baby Moon could happen. They also suggested giving less formula or no formula. I thought about the embarrassment of her crying at the breast because she was desperately hungry and nothing was coming out.

Yes, it’s all about supply and demand, but while you’re waiting for that supply to kick in how do you cope with people looking at your fussing and crying baby with concern. The idyllic image of a mother soothing her baby by nursing them at the breast was a long way off what was actually happening with us.

I was busy with other appointments for the next few Wednesdays so I didn’t make it back to the Breastfeeding Cafe for a while. One Wednesday morning I found an article about upper lip tie that described a lot of the symptoms that R was having. I looked under her lip and saw what I thought was a lip tie, based on the photos in the article. I didn’t want it to be a lip tie because I hated the idea of it having to be snipped. But I also didn’t want to carry on the way we had been. So I went along to the Breastfeeding Cafe, hoping to ask an expert if R had a lip tie. The lady I spoke to explained that lip ties were more of an American thing and don’t really cause any symptoms. She said tongue ties were more of a problem. She looked into R’s mouth when it was open from crying and declared that she didn’t have a tongue tie and her lip looked normal. I was relieved and we moved on to talking about improving her latch because R was prone to sucking my nipple into her mouth “like a wet noodle”.

It was an awful experience. The room was far too hot. R was crying and fussing even though she clearly wanted to feed and go to sleep. The breastfeeding guide was trying to make me change how I initiated the latch. R was in no mood to change anything. The words “like a wet noodle” were used far too many times by this lady who was trying to help me ages, but I ended up wanting to hit her with a wet noodle. Stop likening my breasts to noodles lady!

I said I’d try the new way of latching at home and come back the following week but I never set foot in the Breastfeeding Cafe again. Too embarrassing.

I just muddled along on my own for a time. It got really difficult after three months when R had a growth spurt and needed a lot more milk than I was supplying. I found myself giving more and more bottles. My period came back (I was pretty annoyed about that too) and I wondered if this was a sign that I wasn’t really producing much milk at all. I was rattling from all the supplements I was taking – fenugreek, blessed thistle, goat’s rue, brewer’s yeast, Pregnacare, etc. I was also eating oatmeal and making flapjacks. So much time was spent researching how I could increase my milk supply.

Well into the fourth month, my head was spinning with all the reading I was doing. Along with trying to keep charts and records to figure out what was going on. By this time the reflux was less of a problem but still there. We wondered if she was growing out of it. Milk supply remained a problem though. I hated breastfeeding in front of other people because I was embarrassed about the fussing, the slip offs and the stops and starts so if I had to be somewhere I would take a bottle of formula. This, of course, was making my problems worse so I made the decision to stop going to three of the four baby classes I was going to and stayed home as much as possible. I missed out on bonding with local parents because if they don’t see you, they forget about you. But I had to stop trying to do Everything. I was burning myself out. The more I read, the less I seemed to know. All I could see were barriers and dead ends. I decided I needed professional help.

There was no way I was going to suffer the indignity of being advised in a group setting again so I needed help at home. I reached out to a few private lactation consultants. A very nice lady came and observed us and gave us some tips for a good latch. She acknowledged that at nearly five months old it could be too late for R to learn a new way of latching. She also advised me to double the amount of fenugreek I was taking and also try a homeopathic remedy for milk supply. She was a bit vague with the homeopathic dosage so I didn’t have much faith in that working.

A couple of days later I saw another lactation consultant. She was also very nice but she did something that no one had ever done before. She put on some gloves, opened R’s mouth, lifted her tongue and really LOOKED. Here, after all this time, is where R was diagnosed with a 70% posterior submucosal tongue tie. In a lot of these stories, the parents knew all along there was a tongue tie but they had to search for a health professional to believe them. In my case it was a complete surprise! Tongue tie was a possibility that had crossed my mind but after they had peered into R’s mouth from a distance at the Breastfeeding Cafe and given her the all clear, I thought tongue tie is not an issue here.

The lactation consultant, Petra Hoehfurtner, explained how the tongue tie had been the cause of all my problems from the start. R wanted to breastfeed but she was unable to transfer enough milk with her tongue without getting tired. Tongue tied babies are not latched on correctly so they take in too much air while drinking which leads to reflux-like symptoms. This explains why ranitidine was probably never going to help. R didn’t want to be held by anyone other than me all the time. The only way I could have 15 minutes away to grab a shower was to have someone give her a bottle. Petra theorised that R wanted to be with me all the time so that she was never far from her milk supply. Because the tongue tie was stopping her from feeding efficiently, R grew tired and fell asleep before she was finished so she could never go for long without needing another feed.

I learned so much about the consequences of tongue tie that week. I won’t try to regurgitate them here as articles are easy to find. Suffice to say, after a lot of reading about the pros and cons, I decided to go to Ann Dobson, a widely recommended tongue tie practitioner, with the hope of getting our problems sorted out at long last. Ann can revise tongue ties in older babies without the use of general anaesthetic. If we had tried to go down the NHS referral route it was likely we’d be sent to a hospital that puts older babies under general anaesthetic and we wanted to avoid that.

After the snip things got a little worse with the latch while R learned how to use her tongue again. But after a week or so, we were then enjoying a deep latch and longer, more satisfying feeds.

Tongue tie diagnosis changed my life dramatically. I was living in a fog, constantly thinking about feeding and feeling resentful about bottles and things. I became able to think about other things. Over the next few months my milk supply went up and I felt more confident leaving the house and breastfeeding in front of other people.

I also felt rage. I raged over all the health professionals I had seen who had missed tongue tie diagnosis. I especially raged that R hadn’t been checked for tongue tie when she was born or even after she was weighed on the third day and found to be underweight. I don’t understand why they didn’t think, “Hmm she’s lost too much weight but mum thinks breastfeeding is going well… maybe we should check for tongue tie.” I suspect because this is my second child they thought I didn’t need any help and I was overlooked. They were wrong.

I wanted to write an angry letter to everyone that had overlooked or misdiagnosed us. I wanted them to know the impact that their actions or inactions had on five months of our lives.

Five months filled with weight loss, reflux, choking during sleep, losing milk supply, tense upper body, excessive wind, etc.

Five months seeing:

3 private paediatricians

3 GPs

2 midwives

1 health visitor

3 breastfeeding counsellors

2 osteopaths

That’s a lot of letters to write and I doubt it would change anything. Many of them probably thought that someone else had already checked for tongue tie and ruled it out. It’s hard to unpick who was really at fault here. Instead, I decided to focus my energy on helping R to use her tongue to its full potential with stretches and frequent feeding. I focused my energy on getting the life that I’d hoped for while I was still pregnant. Feeding is going well now. R clearly enjoys it and it both calms and nourishes her. And many of you have no idea how freeing it is not to have to wash and sterilise bottles or carry milk with you whenever you leave the house, but I’m grateful every time I think about it. Rage at those first few days in the hospital has now given way to exasperation. One day it will just be a distant memory.

Things I wish I’d read before birth:

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