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Thread: You see what you know (a baby anecdote)

  1. #1

    Default You see what you know (a baby anecdote)

    Just a little follow up to this post by GGT from earlier this year:

    Quote Originally Posted by GGT View Post
    Juno the baby girl is beautiful, but she might need to have her lower lingual frenulum clipped like my son did.
    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
    “Humanity's greatest advances are not in its discoveries, but in how those discoveries are applied to reduce inequity.”
    — Bill Gates

  2. #2
    Like you said, I probably saw it because I knew it from experience. We were fortunate to have an older, very experienced pediatrician who was big on breast-feeding and La Leche League. He did a thorough exam of my son's mouth/palate/tongue the first week, pulled his tongue up and out, noticed the tight frenulum and a distinct heart-shape at his tongue tip, but gave us time to decide what to do (if anything). There was some clucking and gurgling during nursing so we decided to have it clipped the next week, which made a huge difference right away. I vaguely remember my mom saying I was tongue-tied too, so apparently it runs in families (?)

    Coming up next....Baby Teeth! Anyway, glad it all worked out well!

  3. #3
    Let sleeping tigers lie Khendraja'aro's Avatar
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    I sometimes think that it's due to universities selecting for the wrong thing - namely good grades only. Which is not a reliable indicator for a good doctor.

    I've experienced this dismissal or outright lying several times now:
    1) When I went to my (now ex) general practicioner and told him that I suspected I might have a kidney stone he skoffed and basically sent me away. Without doing an ultrasound or even asking how I arrived at that idea. If he had asked he might have discovered my history of stones and that by then I had a good idea of how a stone felt [i]exactly[I]. The next night saw me in the ER of our local hospital.
    2) In this hospital they insisted on inserting a double-J catheter into my ureter. Using only local anesthesia. They told me this would be sufficient. It wasn't. It's also that shit during the procedure: "Please relax!" Have you ever tried "relaxing" when you're in quite a bit of pain? And upon removal of said catheter they told me: "This won't hurt a bit!" Like fuck it didn't. My scream as the doctor literally janked the thing out must've been quite loud as nurses from the adjacent rooms came running...
    3) A dentist needed to replace a loose filling and I asked for local anesthesia. She complied but the drug didn't quite take. When I told her that it was still hurting she told me to stop fidgeting and that it was impossible for there to be pain! I demanded a temporary filling and then went to another dentist who believed me when I told him that the first dose did not take. I needed three.

    In general, I now do not believe doctors and their stories about how painful a procedure will be, at all. In the future I will ask them back: "Did you experience that first hand? No? Then you do not know what you're talking about."
    When the stars threw down their spears
    And watered heaven with their tears:
    Did he smile his work to see?
    Did he who made the lamb make thee?

  4. #4
    Yeah, I remember your kidney stone debacle, Khen. That reminded me of my mom's kidney stones, and her troubles getting proper treatment, including doctors telling her that extracorporeal Lithotripsy was no big deal. This was back in the 90's, but she was somewhat traumatized by the procedure because she was 'trapped' in a small, enclosed space for an hour, alone, with minimal anesthesia, and she was claustrophobic. I'm so glad I was there for her emotional support afterward, even tho the doctors had told her she only needed a ride home....

    That was around the time hospitals started asking for patient feedback and used surveys to evaluate their performance. It must take a long time for that patient subjectivity to "trickle down" to medical school education, huh.

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