Just a little follow up to this post by GGT from earlier this year:
I don't remember whether I ever replied to this, but here's a story.
I'd been idly wondering whether our daughter had a slight tongue-tie, due to her prolonged struggle with breastfeeding right from the start. I brought up this concern with every midwife and doctor we encountered early on, but they weren't really interested. The nursing specialists just barely examined her tongue, and were a bit peeved by the question. So we thought perhaps this was just the way she was, and eventually we managed to help her find a technique that worked for her.
Once she started sticking her tongue out at people, I noticed her tongue deviating slightly to the right on some of her photos. It was only occasionally, and it was very difficult to see irl. But GGT's comment made me think that I wasn't imagining things after all, so we asked for another assessment... and another. They concluded that there was no suspicion of ankyloglossia, that, in any event, she was a happy and healthy—if small—baby hitting her milestones ahead of schedule, and that we were doing well under the circumstances. When we started weaning, and she was able to supplement her calorie intake, she swiftly went up two channels on her growth chart, and a lot of things started happening in rapid succession. We discovered that there were some consistencies and textures of food that were more challenging to her, and so we reviewed everything that had happened this past year—and determined that a slight but significant functional issue with her tongue would best explain the whole picture. So our midwife referred us to a speech-language pathologist, who was able to very quickly confirm that she did indeed have a very slight but functionally significant tongue tie on the right, almost certainly the reason for the prolonged challenges with breastfeeding, reluctance to nurse from a bottle or use a pacifier, and a few other related issues. Those who had examined our daughter previously had probably been misled by her ability to extend her tongue pretty well, and by their lack of experience with examining a baby's tongue by touch—as well as their inexperience with functional oral problems.
Things are mostly all right now; she's learning to eat all sorts of things, has obv. developed compensatory strategies, and shows no obvious signs of speech impairment yet. Nor are there any other motor or sensory development issues. But the journey to this point was considerably rougher—on my wife in particular—than it had needed to be, because these problems meant that the baby was much, much more dependent on her mum. Because we were able to adjust to her needs, she was very happy—but it took a physical and psychological toll. We'll wait and see where things go from here;, if any speech issues manifest, we'll get it fixed.
This was the fourth significant medical issue with the baby that was dismissed (the first three we just diagnosed and addressed on our own); there were other similar problems around labour as well. Friends and colleagues have since told me that midwifery in particular suffers from a number of cultural problems, here in Sweden. There is a pervasive laissez-faire attitude that I can understand to some extent as a response to insufficient or low-quality evidence for specific interventions, but that may often simply reflect a lack of interest and knowledge. The field is somewhat isolated, and their culture is a little parochial; Swedish midwives who work abroad for a while tend to do so at overburdened clinics in developing countries, where there is a greater focus on other aspects of their discipline than on small but important quality-of-life issues. There is a preference for a strange combination of rigid manual-based care and arbitrary professional "judgement", with insufficient emphasis on curious and systematic investigation. I get it, to some extent—helping to normalize common challenges that are just part of life with a baby is important. But the emphasis on consolation and normalization comes with a risk of missing or ignoring easily solvable problems that have a profoundly negative impact on people's quality of life.
One thing I was struck by was how challenging it was for us to get to this point. We have mostly had very friendly and supportive providers throughout, and perhaps that was part of the problem—it made it easier for us to persuade one another that we were overthinking or imagining things. That said, without the advantage of knowledge, experience, professional relationships and language, things would've been much more difficult. I regularly see—or hear/read about—immigrants in particular being unintentionally mistreated in various ways in the Swedish healthcare system, even by otherwise decent and well-meaning professionals; our experiences (and anecdotes from friends) indicate that things could be better even for native Swedes. We could improve matters considerably by facilitating knowledge exchange between clinics and between countries, while simultaneously fostering a somewhat more active and intervention-oriented culture.
The title of this thread is a reference to something one of our profs said on an oral exam (pun intended ). We tend to see what we have learned to recognize; the more things we learn to recognize, the more—and better—we see. So thanks to GGT for seeing—and for helping me see everyone involved has learned something useful from this journey, and perhaps it will one day be of use to one of you as well. cheers