Before I had children, I just assumed I would breastfeed, and if it didn’t work out, I could always formula feed, I didn’t really think much of it. I did read a book about it, but I didn’t really expect any issues, and well… if I did have problems, there was help you could get, or so I thought…
When my daughter was born in 2013, I did not get her to latch that first day. It was not for lack trying on either side. She tried eagerly, and I did my best to get her head in the right position, as I had learned on a breastfeeding course our MVC gave when I was pregnant. It did not really help though. She could not seal her mouth around my (not that pointy) nipple. Every now and than a nurse walked in to our room to try and help. Some tried to push my breast in her face (which was far from helpful) Others gave tips on different positions, but it was a bit hit and miss. Fortunately my milk came in already, and on the second they they gave me a pump so I could get some milk out. I also got help from a winderful and more knowledgable nurse who taught me the ´hamburger grip´ and the cross cradle hold. This helped to get my daughter to latch, and although it was very painful, I did manage to get milk into her. On the third day we were released from the hospital, armed with a nipple shield because she still let go of my breast a lot. The shield didn’t help much with that, but it made things slightly easier for her. When we saw the BVC nurse at 5 days old, she was a bit worried because our daughter had not gained much weight, and we had to come in every second day to weigh her. In the mean time my breasts had huge sores and nursing had become even more painful than the delivery. I was dreading every feed. There were a lot of those, because our daughter never seemed satisfied, and probably had a tummy ache from all the blood in my milk and all the air she took in.
She did meagrely gain, but the BVC wanted me to top her up with formula feed. The BVC nurse checked how we nursed, and the latch seemed fine to her, but she told me that my breasts were empty after 20 minutes, so if my daughter was still hungry after that, I should really give her a bottle. My concerns about my own production were brushed off, and the pain was normal and would go away. It really didn’t feel right. Was this really normal? This wasn’t like I had read or learned during the course. I (rightfully so) thought that my breast were supposed to continuously produce milk, and if my daughter didn’t stimulate them because she was getting formula instead, it was almost certain it would effect my apparently not working production even more.
Once at home my best friend told me I had to seek help from a lactation consultant, some pain was perhaps to be expected, but this kind of pain or bleeding nipples really wasn’t normal. Looking at her weight gaining schedule according to the WHO curve, we were still above the minimum of 120 grams, so topping off with formula should not be necessary. We went to amningsmottagningen the next day. The nurse told me it was difficult for my daughter to get a latch because I had big breasts and small nipples. It felt like I was the problem. I could not do something basic like feeding my own kid because my breast were not shaped right. Not once did someone check her mouth. Breastfeeding is an interaction between a mother and the baby. Some breasts (like mine) are more difficult to latch on, but with my daughters inability to lift her tongue, curl her lips, and open her mouth wide enough, we really did not have a fair chance. Since my DD had a posterior tie it probably wouldn’t been discovered anyway, but it would have been nice if they had at least checked her mouth for abnormalities. I got some more help with positioning, and the nurse confirmed that with the amount of weight gain we had, formula supplementing wasn’t necessary. I knew a nipple shield wasn’t good, but nursing without was nearly impossible, so 9 out of 10 feeds we used it, and fortunately in time my nipple healed. When she was 3 or 4 weeks old I could nurse pretty much without pain, but hardly ever got her to latch without a shield.
She herself wasn’t too happy though. She fed pretty much around the clock, and if she wasn’t nursing we had to carry her. Hurray for babywearing 🙂 Her crib was never used, she slept in between us and woke up frequently to nurse. Because she seemed so unsettled the whole time we decided to top her up with formula anyway, to see if that made her more content. But she didn’t handle the bottle much better than my nipple. Formula leaked from both sides, and she chocked in the milk stream, no matter what bottle we used. It did help a bit though. We managed to get an extra 30ml in her a few times a day this way, and she did seem a bit more content, although it also seemed like she had developed silent reflux. Her growth curve was on the lowest line, but she stuck to that line. In the months following nursing was not the cosy, bonding experience you always read about. The older she got, the more impatient she got, making aggravated noises whilst nursing, and still never content, but also refusing formula most of the time. She also developed a very persistent thrush that didn’t make it any easier. I called amingsmottagningen a few times, but they told me they couldn’t do much for me. It sounded like I had a very feisty girl that knew what she wanted, and that my milk stream was probably too slow for her liking. My days consisted of nursing, pumping (in an attempt to get my production up whilst my daughter took one of her 30 minute cat naps), cleaning the pump, nursing again, feeding what I had pumped (nearly nothing most of the time) and nursing again. I really really really wanted to give up nursing, but at the same time it felt like I had failed her, and should continue. It wasn’t like she took the bottle that well, so at least my milk gave her some health benefits. I decided I wasn’t going to stop, but also wasn’t going to pump anymore. I would just give formula and offer my breast and we’ll see how long I would have milk. But my daughter started to refuse the bottle all together when she was around 4 months, and I had no choice but to nurse. We created a routine of her drinking for 1 or 2 minutes every hour or 30 minutes during the day, and during the night we got max 2 hours in a row. People around me told me that wasn’t normal, but it was kind of working for us, and I had no idea what to do about it. In hind sight she just drank my letdown, and wasn’t able to get any milk out after that, but at that time I had no idea. I was lucky my let down was apparently strong enough for her to drink/grow from.
At 6 months, we started introducing food, but she didn’t know what to do with it. It wasn’t till she was 8 months that she actually started swallowing it, and she choked on pretty much everything. Baby led weaning went slightly better than purees, as she refused spoons all together, but many textures gave issues. I still remember the feeling of relief when she finished her first piece of bread when she was 11 months. Her fontanel always looked dimpled, and we had started supplementing with formula again, but keeping her fed and hydrated was a huge task, especially after moving from Sweden to warm and sunny Australia. Fortunately water melon was a huge favourite and something she could eat without issues. Keeping her fed and hydrated was a 24/7 task, but both me and my sister had been picky eaters, so I assumed she was just a very picky eater as well. We had no idea there might be a physical cause. Whilst she grew bigger her latch had ‘improved’ (Her mouth grew, she got stronger and she had learned to compensate) and she could nurse longer nowadays, though it didn’t seem like she got much milk out. She nursed especially well during the night, and that’s when most of our feeding took place. It was the only time she was calm enough to somewhat properly latch on. Every time she was teething I had wounds and painful nipples again, and even when she wasn’t teething I would have teethmarks after nursing. She had learned to latch using her gum to hold on, which was okayish without teeth, but quite uncomfortable with, especially if she wanted to comfort nurse all night long.
When she was about 13 months old I read something about a lip tie, and having no idea what that was I lifted up her lip, and saw a thick flap of flesh between her upper teeth (she had one of those cute gaps between her front teeth) that made it impossible to lift her lip any higher. No wonder brushing her teeth was such a drama! Thinking about all the worries and pain we had gone trough because of something the healthcare system should have picked up got me really mad and upset. All these months of struggling to feed my kid, and no one ever even bothered to check her mouth! I started reading up on the topic, and lots of small things just clicked. We consulted a speech pathologist specialised in ties, and she confirmed there was a very thick lip tie, and also a posterior tongue tie. I did not expect that, I had heard of tongue ties, but our daughter had been sticking hers out lots and lots, and very far! (you can see her on the header image of this page) It was only then I learned that not only the sticking out movement is important, but that a tongue also has to be able to move upwards to be able to nurse (and swallow!) effectively, and that in her case she was also somewhat restricted in moving it left to right, which made it more difficult to move food around in her mouth. She had laser surgery a month later with one of Australias best specialised dentists when it comes to ties.
Our daughter had quite a late release. Too late for some things. She has never been able to correct her latch, and has always used her teeth instead. Eating improved, but drinking enough is still (she is 4 at the time of writing) an issue, as are some textures. I think my child is on of a view that doesn’t like french fries :). Her vocabulary went up from 10 words at our first visit to the speech pathologist to 80 one month later, after she had laser surgery. She pronounces very clear for a 4 year old, and is fluent in 3 languages so we seem to have hopped over speech issues at least. The biggest improvement was her sleep however. Although at 4 she often still wakes up once a night, she went from waking up between 7-12 times a night to only waking up once or twice directly after the surgery. She also sleeps with her mouth closed. We were lucky to have moved to Australia, where the knowledge about ties and the impacts of them is much more widely spread than in Sweden. We had lactation consultants guide us directly after, and were recommended the right therapists for help with the healing process. We got tongue exercises, speech therapy and CST/chiropractor support, most of that is still unknown in Sweden unfortunately, and even speech therapists learn very little about tongue ties during their education.
Our second baby, the process of getting the right treatment in Sweden.
We moved back to Sweden in 2015 when I was 33 weeks pregnant of our second child. I knew that I would probably need to see someone specialised in ties, as it was likely our son would be born with a posterior one if he had one, and many only cut the anterior part, but I could not find much info in Swedish. I looked in some Facebook groups, and got the name of a doctor in Stockholm in an expat group. I became a member of the international tongue tie group, but all I got there was the name of the same doctor in Stockholm, and no one was sure how she was with posterior ties, so I wasn’t too hopeful about being able to nurse problem free this time. When my son was born it was immediately clear he had a posterior tie as well. His lip-tie did not seem as thick as with our oldest, but he had all the signs of a posterior tie; a cupped tongue, difficulties latching, very painful nursing, despite of the cross cradle hold with hamburger grip, and lots of gas. I pointed out his posterior tongue tie straight away, and the BB paediatrician referred me to Borås ÖNH, despite of her not seeing anything wrong. We got an appointment the next day already, so that was a pleasant surprise. Once there I had to place my son in my lap and they checked with a wooden spatula and used some sugary water. In response my dearest 3 day old baby immediately stuck his tongue out. That meant the end of the investigation, a baby sticking his tongue out could not have a tongue tie according to that ENT. The articles about posterior tongue ties were barely looked at, and my protests about wrong positioning were waved away. A second doctor was called in but he agreed with his colleague, and a snarky remark was made about my protests that I had two foreign specialists (the one from Australia, a Dutch specialist, and a lactation consultant) confirming my son had what looked like a posterior tie. My hope had already disappeared when they made me sit with my son in my lap to check his mouth, instead of laying down (which is the only correct position to assess a posterior tie in), but being treated like that left me feeling utterly frustrated and not taken seriously at all. I was that mother that probably had read something on the internet. And why I had nursing difficulties was not their problem. He was gaining weight fine, a perfect average baby. So apparently nursing was not an issue. That I had to pump between feeds and cup feed him and was basically putting all my energy in keeping his weight gain up was apparently no issue, and if I thought it was I should just bottle feed.
I posted in the international group again, in the hope to find someone local that could help me and I found Vera, another mother with nursing issues that had a hard time getting the right help. Vera and I started talking about our frustrations with the lack of knowlegde here in Sweden when it comes to tongue ties and breastfeeding, and that it is so difficult to find good providers over here. We decided to start a support group, to spread the knowledge, and here we are 1,5 year later!
Via one of the members of our newly started group I heard of a private clinic in Gothenburg that might be able to help us, so that’s where we booked our next appointment, whilst I was also at the waiting list for Östra’s ÖNH. The doctor at the private clinic was very kind, listened well, and was interested in the information I brought with me. Though initially also doing the exam with the baby on my lap and a wooden spatula, he allowed me to show how to bring forward a posterior tie. He agreed it did look tight, but he did not dare to cut it because it was so far back, but he had a colleague who he thought could do it under narcosis. It was already such a relief to finally being listened to and taken seriously, but knowing a good provider can do it without narcosis, I declined. We went to Östra sjukhuset in Göteborg a week later and had another two doctors tell us nothing was wrong with my sons tongue, again only looking with a spatula. One went as far as telling me that if they would cut whatever frenulum was there, my sons tongue would loose function and just hang out of his mouth floppy. The other doctor nodded agreeingly. I am still not sure how or why they think this. Even though posterior tongue ties are only recently gaining more attention all over the world, I would expect en ENT to have more knowledge about oral anatomy. By this point I was so upset and shocked by these statements of not one but two ENTs that I just left. Lack of sleep and putting all your engery in feeding and caring for a colicy newborn can make you very emotional 🙂
We were stuck. Going to the Netherlands for treatment required a passport, and getting a passport required us to travel to Stockholm. Knowing what was wrong and not being able to get help was almost more frustrating than not knowing help is available at all. As I didn’t have anything to loose I booked appointments at the dutch ambassy for a passport and the private ÖNH clinic in Mörby. If she could not help us we would have passports to travel to the Netherlands. But we were in luck this time! Amelie looked in our sons mouth, pulled forward the tie and immediately diagnosed both a lip and tongue tie. The relief I felt was incredible. Even with two photo/video diagnoses, the first hand experience we had with our firstborn and everything I had read and seen I had started doubting if we really had a tongue tie after seeing so many doctors who denied that. Since we travelled such a long distance she cut both the tongue and the lip in one go, and 15 minutes later I was successfully nursing a hungry boy in the waiting room.
It had taken us 8 weeks and 5 doctors before we got help, but what a difference it made! His latch was much bigger, my nipples not as pinched and I finally had time to do something else than just nursing (also greatly appreciated by our at that time 2 year old daughter). The biggest difference was our sons colic. He went from 6-8 dirty diapers a day and screaming uncontrollably for sometimes hours in a row, to just 1-2 diapers. Immediately after the cut. He did not get as much air in his tummy and his cramps also disappeared from one day the to the other. Our symptoms were only mild this time, especially compared to many other stories your can find here. He gained weight just fine, unlike his big sister, and he did not have reflux. my pain had faded after the first few weeks, but we still had a lot to win from the cut. 8 weeks of belly aches could have been avoided, or at least been a lot less. My bleeding nipples (I can guarantee you I much rather would have gone through another delivery) could also have been avoided. If he would have slept better or not we’ll never know, I suspect that if he was more satisfied and in less pain that would have improved as well, but even at 17 months he still wakes up very, very often.
Unfortunately over time his latch got sloppy again, and our nursing sessions more frequent. His colic didn’t come back, but since we were planning a family visit to the Netherlands anyway, I decided to check up with a dutch dentist specialised in ties. She confirmed there was reattachment and that it wasn’t even as posterior as it could have been. It wasn’t even submucal. Kirsten, the dutch dentist uses an Electro surgery instead of scissors, which closes the veins while she cuts, so there is less blood. Like in Australia there is much more attention for the after care in the Netherlands, and there was a lactation consultant on the spot for help with nursing right after the treatment. Stretches are also recommended to prevent regrowth and so is chiropractor treatment. The chiropractor we went to actually told us he sees much more regrowth with babies he gets referred from another provider who only recommends suck practice. With our oldest we had stretched the tongue and lip every 6 hours for 3-4 weeks, but with our youngest we had gotten a bit sloppy, also because we were told it wasn’t needed. There is a lot of discussion around the topic of wound management/ after care, but all (foreign) specialists agree that this is essential to prevent regrowth in many tied babies and children.
I think it is such a great approach to work with a multidisciplinary team to adress all the issues that can come from a tongue tie. A cut is one thing, but for many children this doesn’t immediately solves the problem. Even in the womb a baby is already learning to compensate for the tongue restriction, and the older a kid is before its cut, the more it has compensated, so often a lot of extra training is needed. We definitely see a clear difference between our two children and the difference in response/after care needed, and the age they were cut.
We currently have a 17 month old boy that really enjoys to eat, which is a huge relief after our oldest. We also finally managed to have that cosy, snuggly, bonding breastfeeding experience I never really accomplished with the oldest. Although in her case it was even more important to continue nursing, because she would stop eating all together as soon as she got a cold, so for a very long time in periods it was the only way to feed and nourish her. Though we never tried to make an issue out of it, getting enough fluids and food into her has been a daily struggle for a really long time, but she is also doing well now. It is unbelievable how what seems like such a tiny issue, just a thin flap of skin that should not be there can influence so many things. Symptoms can vary greatly between individuals and some kids and babies experience lots of issues with posterior ties, whilst others eat, nurse, sleep and talk (or compensate) fine despite of a very obvious anterior tie. The baby you can see in the header of this page is our daughter, and despite of her tongue tie you can see she can stick out her tongue very far. Looks can be deceiving and I hope the Swedish healthcare system will realise that ties should be considered as one of the causes or problems whenever a baby or kid has issues with nursing/eating/reflux/colic, even if it’s not a very obvious tie. Our symptoms were only mild compared to some other stories on this blog, but they still seemed to have a huge impact on so many different factors, and definitely put an unnecessary strain on the first time we had with our kids. As a first time parent you are very insecure and you want to trust the professionals that are there to help you, not a random facebook page or an article on a website. And yet, this was for us what got the ball rolling, and offered a solution where health care professionals did not listen, or just told us everything was normal without looking any further. With our support group we hope to offer other parents information and support, and also hope to encourage midwifes, BVC nurses, doctors and other health care professionals to seek out more information, and offer better support.