I have been successfully nursing my baby for just over a month now. That probably doesn’t sound like much but, as of today, Arik is already five months old. The first four months of his life were fraught with shoddy medical advice, struggles to feed – by both boob and bottle – poor weight gain and immense frustration.
As far as nursing goes, this isn’t my first kick at the can. I nursed my daughter for nearly two years and, in all honesty, I hadn’t realised just how good I had it. It was easy. Sure, it was an adjustment at first – we jokingly referred to Linnea as a shark for the gusto she employed when latching on – but it happened naturally, easily. There was nothing easy about nursing Arik.
With Arik, I noticed early on that things weren’t right. When he was born, it was about five hours before he tried to nurse, in spite of me offering him the breast right away. When he finally started nursing, it wasn’t an easy latch. He’d try, seem to be on for a moment, then slip off again. But at least he seemed interested. I assumed it was just him adjusting to “life on the outside” and that he would get better as the days went on. The nurses I spoke to thought the same.
We were released early from the hospital on my request; everything seemed to be going well and I was keen to be home with the rest of my crew. On our first full day home, Arik seemed a bit lethargic and still wasn’t nursing well, so we brought him back to the hospital to make sure things were ok. They ran a bunch of blood tests and checked to make sure he didn’t have jaundice; everything came up clear. I told the health nurse on duty that we were still having trouble nursing, so she watched as I tried to nurse him and gave some suggestions of positions, etc., that I could try, but agreed that he probably just needed some time to figure it out; nothing to worry about.
When Arik was 10 days old, we had a home visit from our health nurse. We felt things were going fairly well by that point. Arik was nursing, although it was definitely more of an ordeal than it had ever been with Linnea, but I figured he was just a bit of a fussy baby. When it came time to weigh him, however, we had a new indication that not all was well. He had barely gained any weight up from the initial drop after birth. The health nurse was a bit concerned and wanted us to come into the clinic two days later to see if it was maybe just her scale that was the issue. She mentioned the weight thing so many times, it started to make me nervous. If only we’d known…
The weigh-in at the clinic confirmed that he wasn’t gaining weight as quickly as we’d hoped. We had a different health nurse this time. Tove was more relaxed about it than the other health nurse had been. She agreed that he wasn’t gaining as quickly as we might hope, but didn’t feel it was anything to worry about just yet; we’d continue to follow-up on it and hopefully things would soon turn around. She told us that some babies – including both of her own – take a bit longer than others to get back up to their birth weight. We liked how calm this health nurse was and asked to be switched to Tove going forward. By this point, Arik was 12 days old and still not very good at nursing. I told Tove how he would try to latch and then angrily pull off, thrashing his head about and howling in frustration. She watched me nurse him but, go figure, he seemed to do well with an audience. She didn’t think I needed to worry about it. I asked if he might possibly have a tongue tie, as I’d read up a bit on it and he seemed to have many of the symptoms (poor weight gain, trouble latching, thrashing head, etc.) Tove admitted she wasn’t particularly familiar with tongue ties, but looked in his mouth and said he didn’t have the tell-tale “heart shaped” tongue, so she didn’t think it was a tongue tie. I let it go.
In Norway, there is a group called “Ammehjelpen,” with women who give advice and support on breastfeeding. One particularly frustrating middle-of-the-night attempted feed, I sent a text to one of the Ammehjelper in Drammen to see if she could pay us a visit to possibly help me figure out what was going wrong with nursing. We messaged back and forth for a few days, with her telling me that she could call me to give advice, but that they don’t generally do home visits unless the situation was dire. I didn’t see how a phone call could help me much and, eventually, she just stopped responding to me. So that was a dead end.
As the days stretched into weeks, Arik still wasn’t gaining weight well. He was nearly a month old before he was back up at his birth weight. Tove assured us again that some babies just take longer, though, and said we’d continue to keep an eye on things. Pat, the doctor at the health clinic, was a bit more concerned about the slow weight gain and advised us to bottle feed Arik for a few days, so we could monitor how much he was taking in. We started off with a combination of bottle feeding him pumped breast milk a couple times per day and nursing the other times, but his weight gain still wasn’t great, so we tried exclusively bottle feeding him over a weekend. Fantastic weight gain! (And I breathed a sigh of relief that it clearly wasn’t my milk then, as it had been almost completely pumped breast milk). We went back to a combination of nursing and bottle feeding, at the advice of yet another health nurse we met with. She also gave me tips on nursing, as I was still really struggling with Arik’s latch, and showed me how to properly use a nipple shield, as I’d been struggling with those, too. Pat figured Arik was still trying to learn how to nurse properly and said it might just happen on its own once he was strong enough, with 5kg seeming to be the magical number, if only we could reach it… In the meantime, I had to simply keep trying to get him to latch and supplement with bottles of pumped milk in between.
Another week later and Arik’s weight gain had basically flat-lined. At this point, Pat stated with no uncertainty that we had to exclusively bottle feed him in order to get his weight up. Frustrating, but we were willing to do what needed to be done. I pumped about six times per day in order to have enough milk to feed him; it was exhausting. And I was still suspicious of a tongue tie. Several of my friends back home had been through it with their little ones and encouraged me to keep looking into it, so I put out a post on an “international moms in Oslo” Facebook page to see if there were any lactation consultants who would do home visits. Mhairi, a lactation consultant from Scotland who recently moved to Norway, came highly recommended and responded to me almost immediately. She said she could come out for a home visit the next day.
Within a few minutes of having looked Arik over, Mhairi told me definitively that he had a tongue tie, and quite a severe one at that. She checked multiple times to be sure and was very confident that that was our main problem. Unfortunately, having not been long in the country, she didn’t personally know of any doctors in the area who did the revisions and said that, as she understood it, few doctors in Norway were well versed in tongue ties. I called Drammen Hospital that afternoon to see about making an appointment to have the tongue tie revised and was told that it was a very simple procedure, so to just bring the baby in the next morning. I thought that was surprisingly easy, given how uncertain Mhairi had been about finding a doctor who could help, but I was relieved to see an end in sight. Mhairi had also put me in touch with a Facebook support group for tongue ties in Norway, but I didn’t think I’d be needing that, given we were going to have the problem solved the next day. Finally, I thought, there was a light at the end of this frustrating tunnel!
We showed up at Drammen Hospital bright and early the next day, April 9th. When it was our turn to see the doctor on duty, she checked Arik over and announced that he did not, in fact, have a tongue tie. Blank stares. What do you mean he doesn’t have a tongue tie? She stated it again. I had apparently gotten my hopes up a little too high that our nursing troubles were at an end, as I promptly burst into tears. I asked what else the problem could possibly be then, since the lactation consultant had been so sure Arik’s tongue was restricted. Rather than answer, the doctor instead asked me how we’d come across Mhairi and clearly wasn’t impressed that I’d “found her on the internet.” She told me again that Arik did not have a tongue tie and said that she couldn’t cut under his tongue since, if he was her own child, she would not do it. Obviously, I didn’t want her cutting into my baby’s mouth just for the hell of it if she didn’t think she was fixing anything, but I asked again what could be causing the nursing problems if it wasn’t a tongue tie. Was there something else we were missing? She shrugged it off and told me that some babies just don’t learn to nurse. As I soon learned, this would be a common conclusion from medical professionals in the weeks to come. I asked for a second opinion.
Over the four months we struggled with Arik’s nursing and weight gain issues, at the very least, most people were at least pleasant with us. Not so, the doctor who provided us with a second opinion during our visit to Drammen Hospital that day. We had to wait a couple hours for her to make an appearance and, when she did, it was clear that she wasn’t happy about it. She stormed into the room as if we had severely disrupted her day, obviously irritated at having to be there. She didn’t introduce herself to us or even look me in the eye when instructing me to “put the baby on the table.” I stood alongside while she checked Arik. After the briefest peek into his mouth and the slight flick of his tongue with the tongue depressor, she announced there was no tongue tie and started towards the door.
“Excuse me,” I cut in hesitantly, “do you speak English?” (Up to this point, everything had been in Norwegian).
“Obviously,” she sneered at me.
Her tone took me by surprise, but I persisted. “Ok,” I started, as politely as I could, “are you familiar with posterior tongue ties? We’ve been told that’s what this is.”
She narrowed her eyes and snapped, “THAT is what I looked for.” She turned to go again. I persevered.
“From what I know…” I stopped, corrected myself and tried again, “From what I have been told and read about it, a posterior tongue tie can’t necessarily be diagnosed by only looking in the mouth. You have to feel under the tongue.”
The doctor quite literally rolled her eyes at me and huffed in irritation. “That’s what I did. He does NOT have a tongue tie.” I asked what else it might be as she continued to edge towards the door. She basically spat her response at me, “Some babies just don’t want to nurse.” At this, she turned on her heel and stomped out, clearly done with the conversation.
I felt my eyes well up again.
I had been standing right there. Her finger had never been in Arik’s mouth and she had not felt under his tongue. I stood there, helplessly, unsure what to do next. I was exhausted from the frequent pumping, attempts to nurse, bottle feeding and frustration over the lack of weight gain in spite of all our efforts. And I felt defeated by the lack of interest in helping us solve this.
The nurse who had been helping us since our arrival was at least kind. She settled me in to try to nurse him again and told me I was doing a great job. She asked if maybe I didn’t have enough milk? I stopped my nursing attempts to squirt some milk into the air. Milk production was not the issue, clearly. “Well,” she proceeded cheerily, “unfortunately, some babies don’t learn how to nurse properly. It’s not your fault. But you can always use Nan.” She meant well, but everything about that sentence set me on edge. First of all, how could it possibly be an explanation that babies just don’t “learn” to nurse? (Or, worse, not “want” to nurse?!?) Arik clearly tries to nurse, but it just wasn’t working. I found it maddening that rather than look further into the problem, the health professionals were just writing it off. And then IF we had to use formula, why do they have to push a particular brand of formula, and Nestlé at that? (For anyone who knows me, they could tell you that Nestlé, for many reasons, is not welcome in my home). I sat in sullen silence. Arne-Morten had recovered a bit from the shock of that last doctor and made a point about how horrible she’d been. The nurse agreed. She said she’d been taken aback by how terribly that doctor had treated us – me in particular – and promised to take it up with her supervisor. No idea if anything ever came of that, but I’d really like to follow-up on it. If that is her typical way of treating patients, her superiors need to hear about it and call her out on it. As if we weren’t going through a hard enough time already; to be treated like we didn’t matter – like our BABY didn’t matter – is unacceptable.
So we were back at square one. The next few weeks were filled with ups and downs. Sometimes, it seemed like we had the weight situation solved, and then the next week, we’d be back at poor weight gain. The days, too, were difficult, with an increasingly fussy baby. Arik could not be set down, even for a moment, lest he dissolve into hysterics. Mhairi, at least, was still trying to help us. She had heard of a doctor in Bergen – the other side of the country from us – who dealt with tongue ties. I tried to get through on the phone to Dr. Nordahl. We were willing to make the trip to his clinic and pay the fees ourselves (he’s a private practitioner) but I wanted to be sure he revises posterior tongue ties before making the trip. After several times of leaving messages and being promised he would call me back, I was finally told to send him an email. So I did. I poured my heart out to him about our struggles which, in retrospect, probably felt to him like an irritating waste of his time, but I was pretty desperate. Two (long!) days later, he finally responded. The response was impersonal and cold. He said he only deals with anterior tongue ties and lip ties, and then proceeded to tell me the prices of an appointment – NOK 2000 just to see him and NOK 3000 if any surgery took place. (Honestly, what is the point in telling me how expensive you are when you just stated you can’t help me?) Disappointed, I emailed back, thanking him for his time and asked if he knew of another doctor in Norway – anywhere in Norway – who dealt with posterior ties. His response? Simply, “Nope.” Well, thanks for absolutely nothing. One more disappointing medical professional in Norway. I was beginning to sense a trend.
In spite of all the pushback, I was still not ready to let go of the possibility of a tongue tie. Through the Facebook support group Mhairi had put me in touch with, I heard that the Ear/Nose/Throat department at the Fredrikstad Hospital apparently was really knowledgeable on tongue ties. I told Tove (our health nurse) and she and Pat agreed it was worth a try. Pat referred us there and they were quick to fit us in. We made the nearly two hour trip out there on April 26th.
Mhairi came with us, as she was trying to establish a network of health professionals in the Oslo area who knew about tongue ties. It was another disappointing failure. First of all, the doctor we initially saw had no idea why we would have been told the Fredrikstad Hospital knew anything more about tongue ties than any other hospital. He personally didn’t know much about them at all and had never dealt with a posterior tie. We ended up seeing five different doctors that visit. They all agreed that there was no tongue tie, in spite of none of them having dealt with a posterior tongue tie before. Again, we were presented with the idea that some babies just don’t ever learn how to nurse. One of the doctors dealing with us said it was unlikely we’d be able to get Arik nursing at this point, since he was already two months old and suggested Arik had possibly become “nipple confused” from using soothers. More conflicting information (or, let’s be honest, opinion,) as I’d asked in Drammen hospital when Arik was born if it was ok to use soothers and was told it was fine. Of all the doctors who saw us that day, the last one, a paediatric specialist, was the most helpful. She agreed with the others that Arik’s tongue was not restricted, although she said he was not using his tongue properly. She suggested getting help from a paediatric physical therapist to perhaps encourage him to use his tongue properly, although she wasn’t very hopeful of establishing breastfeeding either and suggested moving to formula. Overall, it was a disappointing day.
At this point, we had seen seven doctors and all were adamant that Arik did NOT have a tongue tie. I wasn’t sure what to do. I could accept that maybe it wasn’t a tongue tie, but what I couldn’t accept was that none of the doctors had any reasonable suggestions for what it could otherwise be. My husband was convinced at this point that it was NOT a tongue tie and was frustrated with the goose chase he felt we’d be sent on. I asked Mhairi the next day if she still stood by her diagnosis. The Fredrikstad trip had been rough on her, too, as the doctors, although outwardly polite, clearly didn’t consider her to be a medical professional. She was treated with thinly veiled disdain and told me later that it had really shaken her. It took her some time to answer me, as she didn’t want to further confuse us when the doctors were so adamant that no tongue tie existed. I asked her again to tell me what she thought. She maintained her original diagnosis that Arik had a tongue tie.
I continued pumping and we continued bottle feeding Arik. Beyond just me being frustrated at having to rely on the bottle when I so desperately wanted to nurse my baby, Arik was often struggling with the bottle, too. He would frequently lose milk out the sides of his mouth. Sometimes, it went well and the burp rags were mainly dry. Other times, they’d be sopping wet, no matter how hard I tried to keep the milk from spilling out. Arik was nearly two months old by this point, yet we were still having to use newborn bottle nipples with him, as anything else was simply too fast flowing for him to handle. I was extremely stressed out and utterly exhausted. I hated pumping – it was becoming brutally painful and I had to amp myself up each time to just turn the damn thing on, fighting back tears as it started up and continued to shred my breasts.
At around this time, we were reaching a breaking point. Between the pumping, feeding and then sterilizing the pump gear, I already felt like that was all my life consisted of. But Arik still wasn’t gaining weight. We thought perhaps it was because of the energy he spent trying to bottle feed and, worse, the calories he burnt off whenever he was in hysterics… which was pretty much whenever I put him down. In an effort to help him gain weight, I basically held him for a week straight. Throughout the day, I would hold him, rocking him to keep him calm. I became a pro at feeding him with one hand while he sat in his little newborn seat, feeding myself with the other hand, while simultaneously pumping milk for the next feed, and then one-handed sterilizing pump gear or prepping a bottle (I got good at doing everything one-handed) as I once more held the baby. So with all that effort, you can probably imagine my reaction when, at the next weigh-in on May 3rd, Arik had only gained 55g over the course of a week. To put it into perspective, he was supposed to gain a minimum of 150g per week, and ideally upwards of 200g. All my efforts had been for naught and I was on the verge of collapse. Tove asked if my husband could come to collect us and Pat put a call into the hospital. It was time to check us in.
We spent the next few days in the hospital, with Arik being run through a gamut of tests. Thankfully, Arne-Morten was able to stay with us, as I desperately needed the help at that point. I was mentally and physically exhausted and it was all I could do to keep pumping. We had a lovely health nurse, Bente, who tried to help with the breastfeeding. She watched me try to nurse Arik and gave suggestions for what I could try. We would weight Arik before feeding, breastfeed him for 10 minutes and then weight him again to see how much he was taking in. It wasn’t very promising. He was taking in an average of 20ml per attempted breastfeed; not nearly enough. And it was getting progressively worse. It was so stressful and seemingly pointless that we eventually agreed to just give up on the breastfeeding/weighing drama for a time. It was too stressful on Arik and we had to focus on his weight gain.
Over the following days, Arik had numerous blood tests, an ultrasound (head and stomach), and a brain scan. In spite of all the tests, nothing was conclusive. The only thing that was “off” had to do with Arik’s liver. His ferritin and liver enzyme levels were alarmingly high. However, his liver appeared perfectly normal otherwise. There was no swelling or bleeding, and Arik didn’t have any other symptoms of what those high levels might mean. We met with a really fantastic doctor who walked us through everything so far. In conclusion, they still weren’t sure what the problem was; it could be something that would simply clear up on its own. Or it could be a rare metabolic disease. Or leukemia. Thankfully, they were fairly certain it wasn’t leukemia, as there should have been other indicators in that case. But they weren’t yet able to definitively rule it out, so it remained a worry. They wanted to do an MRI to check into more.
We were being released from the hospital on temporary leave, since there wasn’t much more they could do at that point. Before leaving, we met with a nutritionist for further advice on how we might help Arik gain weight. She suggested we add some formula powder to the breast milk to give him an extra calorie boost. She also suggested I try avoiding dairy for a while to see if it was simply a dairy allergy (that seems to be the go-to suggestion in Norway…) After meeting with the nutritionist, we met with another doctor. I was beginning to worry that I was getting a breast infection and had flagged it with the nurses earlier that day. They said there was nothing that department could do, as it was the paediatric ward, so I would have to go to another unit of the hospital to get help. (Which, frankly, was an absurd suggestion, given I was already so busy dealing with a really needy infant!) I brought it up with the doctor. He took a look at the breast in question but wasn’t really sure if it was mastitis or not. He suggested I take some Paracet (Tylenol) and then released us from the hospital.
So we went home. Stressed. Still with no answers. Home with a baby who still couldn’t nurse and increasingly struggled to bottle feed. That night, I came down with raging mastitis. I spiked a fever and was so sick, I could barely stand. Arne-Morten insisted on taking me to emergency. They put me on antibiotics for the mastitis. In spite of that, I got it in my other breast just two days later. Lot of fun… The day after that, we found out that my mother-in-law has cancer. The day after that, we found out she not only has cancer, she has two types.
I’m not sure how much more our family could take…
The following days were a blur of trying to get me healthy again, trying to keep Arik happy (he was still really fussy, although the formula powder in his milk seemed to make him a bit happier), and trying not to lose ourselves to worry for Arne-Morten’s mom. The one shining light in all of this is the amazing support network we have. In that respect, we are well and truly blessed. Over that weekend home, my brother took the helm in our home and handled everything, including doting on his niece who was feeling a bit forgotten in all of this. My parents arranged for an emergency flight out for my mom (who had only just gone back to Canada) and managed to get her out to Norway four days later. I put a plea out to my “English speaking ladies in Buskerud” group and was amazed at how many people stepped in to provide us with dairy-free meals so we could focus on our family and not worry about cooking (especially not worry about the new diet of no dairy for me). And a girlfriend of mine came over and cleaned our house top to bottom while I got in a much needed nap with Arik. The amazing people in our life are what got us through.
On May 11th, we were checked back into the hospital to prepare for the MRI the following day. The MRI was, bar none, the worst experience of my life thus far. Arik had to be put under for it, which is scary enough on its own (there is always a risk with anesthesia, and the first time is always a bit nerve wracking, especially when you’re talking about a baby!) I held Arik as they tried to get an IV into one of his tiny veins. They tried both arms and even his feet… no dice. So to put him under, they had to use gas. Just thinking about it makes me feel sick. I held my baby down as they put a mask over his face and he screamed and gasped for air. I’ll never forget his screams.
Ironically, although going in for the MRI was so horrible, the waking up part, while traumatic, actually encouraged me to keep trying to find a solution to our breastfeeding woes. When Arik started waking up from the anesthesia, he was disoriented and stressed. The only thing that seemed to help was being put to my breast. I’m not sure how much milk he actually got, and at one moment, he made a terrifying choking/puking sound, as if he was struggling to breathe. But he wanted to nurse! It encouraged me to keep looking for answers.
The MRI didn’t tell us anything new and we were once more sent home. My mom had, by this point, arrived to help us out. The next couple of weeks were spent trying to get Arik’s weight up. The formula in his milk seemed to help a bit, although he was still just barely gaining the minimum. His ferritin and liver enzyme levels were also steadily going down, but still a lot higher than they should be, so we were referred to a paediatric liver specialist at Rikshospitalet in Oslo.
One of the most frustrating aspects of this whole ordeal has been the conflicting messages and the extreme lack of communication between the various health professionals. Our first point of contact has generally been the health clinic and Tove, our health nurse. But more often than not, she hasn’t been provided with the results of any tests or doctor visits unless I’ve brought them in myself. And the Fredrikstad hospital didn’t send much information on to Drammen hospital. Arne-Morten looked into it and learned that the main point of contact was supposed to be our family doctor, so I made an appointment with her to update her on the situation. (I had told her about the initial weight gain and nursing problems). Arik and I had an appointment with her on May 24th. She agreed that we needed to get this sorted and that we needed to try to establish breastfeeding. She got in touch with a contact at Ullevål hospital and got us in for an appointment the very next day.
On May 25th, we had an appointment with a midwife, Mari, at Ullevål hospital, who specializes in breastfeeding issues. She said we were an unusual case for her, as she usually saw babies in their first two weeks of life. Believe me, if we’d known about her before, we would have been there! I brought up the potential tongue tie again, as I still felt there was something to that. As we’d encountered almost every other time, she said she wasn’t very familiar with tongue ties. She looked more into the technique on how we were nursing and gave more suggestions. She said she would continue to look into it. While that appointment didn’t give us much in the way of answers, it at least made me feel a bit better: Mari asked if she could give me a hug (which, outgoing Canadian that I am, I happily accepted). She told me I was doing an amazing job with the pumping; that there was nothing more important that I could be doing for my baby right now. She told me to keep up the good work and that we would find a solution! I left there feeling more optimistic than I had in months.
On May 26th, we were once more in Oslo, this time at Rikshospitalet to meet with the liver specialist. She was nice enough, but didn’t have any more answers for us yet. She said that we might need to do a liver biopsy (which would mean more anesthesia…) We had more blood tests, which was another traumatizing experience. The woman who attempted to draw Arik’s blood seemed completely inept. I realise that it is tricky to find a vein on a baby, but Arik has had a lot of blood tests in his short little life and everyone else who has drawn blood has managed without too much fuss. This woman should get a new job. She completely failed with his arms and left him absolutely squalling. They ended up having to resort to drawing blood from a vein in Arik’s head! I was horrified and furious at the unnecessary trauma that woman’s ineptitude inflicted on my baby. As if the poor guy hasn’t already been through enough! The blood tests told us nothing new.
On June 1st, we had another weigh-in at the health clinic. Arik finally went up a good amount over the past week (225g!) but the joy was short-lived as we had to subject him to his first vaccines. He ran a fever that night and everyone was uncomfortable in the summer heat.
June 6th was a turning point for us. I was never able to fully let go of the idea that the nursing problems could be attributed to a tongue tie. Having spoken with numerous other moms who had been through the tongue tie ordeal, the symptoms just sounded so familiar. Since we weren’t getting answers from doctors in Norway, I started looking into specialists in the UK. A new friend I had met through the tongue tie group and been encouraged to get in touch with by Mhairi was also instrumental in me continuing to follow-up on tongue tie leads. Rachel had been through it with her own son and gently encouraged me to keep looking. I reached out to a handful of doctors and lactation consultants in London to see about taking Arik there. One of the lactation consultants I had messaged was Katherine Fisher who co-runs the London Tongue-tie Clinic. She got back to me really quickly and actually happened to be taking a personal trip to Norway soon. Katherine kindly offered to take some time out of her vacation to assess Arik.
Arne-Morten, Arik and I met with Katherine at my doctor’s office in Sandvika on the 6th. She walked us through her assessment and confirmed beyond a shadow of a doubt that Arik did, indeed, have a posterior tongue tie. A severe posterior tongue tie. While a baby should have about 16mm of “useable” tongue, Arik had a mere 6mm. No wonder he couldn’t nurse! Katherine showed my doctor how she did the assessment and my doctor agreed that it was clear the tongue tie was an issue. Katherine also watched as I tried to nurse Arik and, much to my relief, said there was still hope to salvage the breastfeeding relationship, as he was clearly not “breast adverse” and still showed an interest in nursing.
After the appointment at the doctor’s office, we met with Tine from the “Nasjonal kompetansetjeneste for amming” (national competence centre for nursing). I had earlier been in touch with Tine’s colleague, Ina, who had been very supportive of following up on the tongue tie, but had been unable to put me in touch with anyone in Norway who could help me. Tine and her colleagues have been trying to get tongue ties better recognized in Norway and had jumped at the chance to have Katherine here with her expertise. The meeting, however, was not particularly helpful. We still didn’t know of any doctors in Norway who could revise Arik’s tongue tie and, although Katherine said she was open to coming back to Norway to revise Arik’s tie (she hadn’t brought the tools for revising tongue ties with her on vacation), Tine wasn’t certain when we could make that happen. July is holiday time in Norway and, for whatever reason, most of June seems to be a write-off, too. She said we would likely have to arrange for something after the summer. Having waited for several months already, that simply wasn’t good enough for us.
Through Rachel and Mhairi, Tine had heard of another doctor who *might* be able to help us with Arik’s tongue tie. So at her suggestion, I booked us in for an appointment with Dr. Oscar Asante at another private clinic in Oslo. On June 14th, we had a third confirmation of Arik’s tongue tie. Dr. Asante walked us through his assessment as well. Unfortunately, the oldest baby he’d ever done a tongue tie revision on was 2 months old, and Arik was already over 3 months old by this point. He seemed a bit uncertain about doing the revision himself. It was agreed that we would converse with Katherine to see what the best way forward was.
Katherine confirmed that she would be willing to come back to Norway to perform the frenulotomy (tongue tie revision) so long as it would be covered by her insurance. Rachel was instrumental in arranging things with Katherine. In order to have Katherine perform a frenulotomy in Norway (given her insurance for medical practice is in the UK), she needed to be “supervised” by a local doctor. Rachel found us a doctor, Cecilie Revhaug, who was interested in learning more about tongue ties, having had two of her own three children who were afflicted by it. Cecilie agreed to be the supervising doctor.
While all this had been going on, we were still continuing to follow-up with the paediatric liver specialist unit at Rikshospitalet. We had another appointment there a little while after Katherine had confirmed the tongue tie. During this visit, we met with yet another doctor. He went over the latest results with us, letting us know, to our relief, that the levels continued to decrease. Although it was not this doctor’s area of expertise, we were both quite comfortable with this doctor, so Arne-Morten brought up the tongue tie diagnosis and how much trouble we’d had getting it recognised in Norway. The doctor wasn’t surprised and reconfirmed what Tine from the competence centre had said to us about how it used to be routine in Norway, but there were questions as to the necessity of revising tongue ties, so it was stopped. Arne-Morten asked why there were so few doctors in Norway who would do anything about tongue ties. The doctor responded with, “Why would they?” and made mention of the lack of long term benefits. No long term benefits? My baby struggled to eat and therefore struggled to gain weight. I would think allowing him to eat would be benefit enough! And studies have shown that nursing can have a huge impact on the avoidance of post-partum depression in mothers, particularly those pre-disposed to it. There are also concerns that untreated tongue ties can lead to problems eating solids, increased occurrence of reflux (which Katherine said Arik was showing symptoms of), speech impediments and even problems with jaw formation. Unfortunately, it seems the research in this area is extremely lacking; almost all evidence of long term problems associated with tongue ties is anecdotal. This has been one of our major struggles with coming to terms with Arik’s tongue tie. We, however, were convinced enough that we needed to do something.
June 27th, 2016, will forever be an amazing day in my mind. Frenulotomy day. We took Arik into Cecilie’s office in Oslo to finally have his tongue tie revised. Rachel and Mhairi were there to support. The procedure itself was incredibly minor; so minor, in fact, that I missed the actual clip of the frenulum, as I was focused on getting myself set-up to (hopefully) nurse Arik once it was done. A simple clip to the membrane under his tongue and it was done. Mhairi helped me get Arik latched on through a bit of trickery with offering him a bottle and casually switching the nipple of the bottle out for my nipple. I nursed my baby. For the first time in the whole nearly four months of his life, I was able to nurse my baby. That first nursing session wasn’t completely smooth – we had to trick him with the bottle a couple of times – but it was worlds better than any of us had expected it would be so shortly after the frenulotomy. And things just continued to get better from there. I fed Arik his last bottle later that night after successfully nursing him before bed.
I had to use nipple shields for a few more feeds in the following 24hrs, but already by the next morning, Arik wasn’t interested in a bottle. He was finally breastfed.
The baby who “didn’t want to nurse” was fully breastfed!
The first weigh-in after a week of breastfeeding wasn’t all that great, but Arik was clearly more content. Since being able to nurse, he has been a MUCH happier baby (not to mention how much happier his mom has been…) And the weigh-in the week after that was fantastic; our best one yet! Since the frenulotomy, life has been a lot better. We have a happier, clearly healthier baby. He continues to put on weight, his little cheeks have finally filled out a bit and he is happy. The baby who could not be put down is happy.
It concerns me immensely that so little is known in Norway about tongue ties. Further to that, I am horrified by the number of health professionals who told me they were absolutely SURE my baby didn’t have a tongue tie when they had no idea what they were talking about. I understand that doctors are only human; they can’t possibly know everything there is to know about the human body and medical conditions, and all humans make mistakes sometimes. But the number of medical professionals who confidently told us our baby did not have a tongue tie is astounding. Doctors make an oath to “do no harm” and yet, through their misplaced confidence in ruling out a tongue tie without actually knowing about tongue ties, numerous doctors inadvertently caused harm to a baby and his mother. Arik was called a “failure to thrive” baby. He was struggling to get the nutrition he so desperately needed – yes, even with bottles – because the egos of doctors caused them to not admit when they didn’t know something. Had I backed down, had Mhairi second-guessed herself, had I not had the encouragement from Rachel, my baby would have continued to struggle. And it likely wouldn’t have ended with nursing. He might have had trouble with solids. He might have developed speech issues. He probably would have continued to struggle with weight gain and been officially written off as a “failure to thrive” baby. That’s not good enough. That’s not ok.
In the grand scheme of things, Norway has a very good medical system. It’s not perfect, of course, but in comparison to many other medical systems globally, it’s quite good. And I know there are many amazing doctors and other health professionals in Norway. I personally have had very good experiences with the Norwegian medical system previously, and I am grateful for it. But in this case, the Norwegian medical system let us down. The system and nearly all the people we dealt with in it failed a baby.
I have heard so many times that Norway is a “breastfeeding nation;” some even go so far as to say it’s the “breastfeeding capital of the world.” And yet, it seems the moment breastfeeding isn’t easy (which, let’s face it, for many people, it’s not), you’re abandoned. And simply telling mothers to switch to formula is not ok. I am immensely grateful that there is such an option as formula for those who need it and I absolutely support those who choose it, but it should not be the go-to “solution” for moms struggling to nurse until all other options have been exhausted or the mom herself wishes to make the switch. For me, having medical professionals ignore my struggles and push me to use formula when I was so keen to nurse was a really painful experience. It pushed me to the brink of depression and affected not only how I felt about myself, but the energy I had for my baby, my daughter and my husband. All because rather than actually look into the problem, doctors told me to “just use formula.”
Thankfully, Arik is doing well now. But it could easily have turned out otherwise and it might not be ok for the next family struggling with a tongue tied baby. I don’t want anyone else to have to go through what we did. Changes MUST be made and I hope that perhaps Arik’s story can be a catalyst for change in Norway. Tongue ties are a real issue. It’s important that doctors learn about them, know how to diagnose them, and know how to revise them when necessary. Our babies are worth it.