 And so right now I would like to introduce our amazing speakers for this session, for this evening session. I don't know where you're joining from, but it's evening where I am right now. I'm joining from Florida, United States of America. And we have two presenters tonight and they'll be doing justice to the topic, babies, breast and bone, which is an international qualitative survey of individuals with pregnancy and lactation associated osteoporosis. And so the first, we have Dr. Susan Rachel Condon, who is a clinical assistant professor of midwifery at Sony Downstate. Since 2004, Dr. Condon has been a partner in private practice in New York, Hudson Valley, providing primary care across the lifespan and home-based perinatal services. She would also be presenting alongside Madeleine Beach, who is an academic librarian at the State University of New York at New Powell. She's interested in information seeking behavior and social justice in library. So at this point, I would like to hand the moderator over to Susan Rachel. Please take it away. Thank you. Jimmy, I'm not seeing the advancing. Okay, so Lauren, okay, let me make you. Okay, no, I'll just make her a presenter. Hang on. Thank you very much. Thank you very much. So thank you so much for the introduction. I wanted to take a moment first. This is us, of course. I wanted to take a moment to thank VidM for inviting us to present and especially Jimmy and Lorraine for all their support of this session. I also want to thank the administrators and the members of the International Osteoporosis and Pregnancy Support Group, without whom we would not have been able to do our study. So before I start, I wanted to mention that we're going to be referring to this condition as pregnancy and lactation associated osteoporosis or PLO for brevity. But I want to acknowledge that in other parts of the world, it's referred to as pregnancy associated osteoporosis or PAO. This is a quantitative study with qualitative elements that we consider preliminary research into the long-term physical and psychosocial impacts of a rare and often debilitating condition in an already vulnerable population. For the next half hour, we're going to talk about pregnancy and lactation associated osteoporosis, its incidence, the predisposing factors, as well as bone metabolism and pregnancy and lactation more broadly. And then we're going to discuss our results, which come from an international survey we did with people who had experienced PLO. We, in our survey, sought to answer questions about the psychosocial implications of this condition and the healing process and how it might impact decision making about future pregnancies and about breastfeeding as well. And finally, we'll conclude with the implications of our study for midwifery practice. So PLO is a rare and temporary osteoporosis. It's thought to affect about 0.4 in 100,000 pregnancies. But mild presentations may be missed, which would lead to an undercounting of cases. Typically, it's identified due to the discovery of one or more fractures, either very late in pregnancy or in the first two months postpartum. The symptoms usually arise in the first eight weeks after birth. So we're talking about primarily fractures and weight-bearing bones, and bones of the spine are the most common. And pain related to fractures is going to increase in those weeks after birth, bringing people to seek care. And yet there is no standard for diagnosis or treatment of this disease. X-ray and MRI and DEXA scans to look at bone mineral density are common as our laboratory tests for bone turnover and referrals to oncology to rule out osteosarcoma. The average time preceding diagnosis is usually within eight weeks of the onset of fractures or a fractured pain. One thing to consider is that people may be less inclined to present to their perinatal providers for this because they may not associate the pain or dysfunction that they're experiencing with pregnancy or lactation. And this, of course, can lead to a significant delay in diagnosis and, therefore, future and further fracturing. Hospital admission and inpatient rehabilitation are common with this condition, and as you can see here, almost a third of our survey respondents were hospitalized. Another fascinating thing about PLO is that the etiology is really unclear, but what have been identified are a number of predisposing factors. So we could see osteoporosis in a first-degree relative, low body mass index is common, malabsorption disorders in poor nutrition, particularly celiac, and then the long-term use of certain medications that can affect bone density, low dietary vitamin D and calcium, not surprisingly, and a sedentary lifestyle or physical inactivity, and then prolonged periods of inmenorrhea. And these can be the result of the history of eating disorders or hormonal fluctuations and the use of meds like depoprovera. The research is inconclusive about whether PLO is actually caused by pregnancy and lactation or if low bone mineral density is unmasked by pregnancy and lactation, which, and this is what we're going to now talk about, always will result in some transient bone loss that's typically going to return to baseline about 12 months after weaning in those who breastfeed. So let's take a look at the actual bone metabolism. So calcium regulation is going to be orchestrated by the endocrine system, and there are three primary hormones associated with bone mineralization. These are calcitonin and calcitriol, which is the active form of vitamin D and parathyroid hormone. So what happens is when serum calcium is elevated, the thyroid gland will secrete calcitonin, which stimulates osteoblasts to move calcium from the blood into the matrix of compact and cancerous bone. When serum calcium is low, calcitriol, that active form of vitamin D will increase calcium absorption in the GI tract and the parathyroid glands will secrete parathyroid hormone, and that's going to stimulate bone resorption by osteoclasts. Calcitriol is also going to signal the kidneys to restrict calcium excretion in the urine. It's noted that adequate levels of calcium and calcitonin will inhibit secretion of parathyroid hormone, and that's going to help maintain that bone structure. So now we'll take a look at how pregnancy and lactation are going to impact bone density. Generally speaking, pregnancy facilitates calcium absorption. So during pregnancy, if there's adequate calcium and vitamin D intake, the parathyroid hormone levels will appear to be normal. They can sometimes rise early in pregnancy, but by term they should be normal. And then we have the mineralization of the fetal skeleton, which is predominantly going to happen in the third trimester, and that's going to increase the demand for calcium at that time. These are physiologic adaptations, and research has not demonstrated any correlation between parity and bone density or fracture risk. The maternal kidneys and bone regulation are also responsible for ensuring that there's adequate calcium for milk production. And finally, up to 10% of bone density will be lost, and that's normal in the first few months of lactation, and will be recovered spontaneously after weaning. And this illustration, you can see the adaptive physiologic means by which the increased demand for calcium during pregnancy and lactation are met if you follow the arrows. So now I'm going to hand it over to Madeline, and she's going to talk to you about our study. Thank you so much, Susan Rachel. And I think Lorraine, are you able to make me present her with the next stretch of slides, and then at the end we switch. Madeline, you're muted. Whoops, sorry. Oh, okay. And now I'm presenter. Wonderful. So I was actually myself diagnosed with PLO in 2019 after the birth of my little one. And one of the things I learned at the time is that there were very few studies that looked at larger groups of people with PLO and very few that could answer the questions I had. And I know my clinicians had about what recovery might look like, what kinds of support would be needed, and what I could expect in terms of mobility in the long term. There were a lot of case studies that addressed small numbers of people with PLO or that looked in a more focused way at specific treatments, and these tended to come out of endocrinology. As we've mentioned, our study focused on psychosocial impacts and really sought to identify trends and experiences related to diagnosis and recovery, as well as outlook about future pregnancies after PLO. When I was still in the hospital with my fractures, a doctor at Columbia, Dr. Adi Cohen, who I had been emailing with because of an ongoing clinical research study she was conducting, referred me to an online support group. And when Susan Rachel expressed interest in collaborating and research on PLO, we knew that this would be a great population to survey because of its size. At the time, it was over 300 members, and now it's close to 400 members. And we were able to get 69 respondents to answer our study. They came from 12 countries, primarily the US, the UK, Australia, and other countries in Europe. So just to tell you a little bit more about the respondents to our survey, the median age of the time of survey was late 30s, and most had been diagnosed in the last 10 years. The majority had had their fracture onset with their first birth. So for almost a third, the diagnosis didn't come until after their second. The vast majority had no previous diagnosis of osteoporosis or osteopenia before their incidence of PLO, and very few had had the type of minimal trauma fractures that might indicate low bone mineral density. So this suggests that for most of our respondents, there was no obvious indication that they were at risk for PLO. Were they to have known about it as such a rare condition. I'm going to talk a little bit about the onset of fracture pain, which Susan Rachel talked a bit about earlier. So a little over half of our respondents started having fracture pain before birth, or sorry, after birth, but before three months. But about 20% had their onset of pain in pregnancy or while giving birth, and another 17% beyond three months postpartum. But it's noteworthy that that window between birth and three months is when lactation draws most heavily on the maternal skeleton in order to provide minerals for the baby through breast milk. Delays and diagnosis were reported almost across the board with only 5%, which is three out of our 69 respondents receiving a diagnosis in less than four weeks from the onset of their pain. So for almost 70% of respondents diagnosis came somewhere between one and six months from the onset of their fracture pain, which means they likely spent weeks or months struggling with pain and impaired mobility leading up to that diagnosis. In this graph, the x-axis is the number of reported fractures and the y-axis is the number of respondents. So around 60% of our respondents reported having between four and eight fractures as a result of their PLO. One limitation we've had to address in our study is that it's possible that individuals with more fractures may be more likely to have found the support group and to have seen the call for participants simply because they were pursuing greater levels of support. So by far the most common fractures we saw were thoracic and lumbar vertebral fractures. This is likely because when the body needs calcium, beyond what diet can provide, either to maintain safe levels in the blood or for lactation, the first stores that it pulls from is the spine. And you'll see that there was a distribution of other fractures, including sacrum, pelvis. Though we didn't have respondents with femur fractures, those do appear in the literature as well. Okay, so I want to talk a little bit about the healing process and the experience that our respondents shared with us. Healing from this condition is a multimodal process. Overall, one of the things respondents mentioned was a lack of team-based approach in their care. So people with PLO reported having to make a great number of decisions from when to wean, how to adjust their diet, whether and when to pursue physical therapy. And for some of those decisions, there could have been greater guidance and coordination between midwives, endocrinologists, orthopedists, and physical therapists, among others. Most respondents did discontinue breastfeeding either immediately or sooner than they had initially planned. Once weaning takes place, not only is the source of bone loss removed, but as Susan and Rachel discussed earlier, there is that rebound effect in which the body seeks to recover lost minerals in the skeleton. So weaning commences what's typically described in the literature as about a year of more intensive bone rebuilding. Many respondents sought to balance their diet or supplement vitamin D and calcium. So the advice for healing is to avoid bed rest and to encourage weight-bearing exercise as tolerated, but with a caution around lifting especially. And this can be really challenging because often the weight limit is going to be less than the weight of a baby. So in terms of parenting, that's a real challenge, but this is essential to preventing further fractures when bone mineral density is dangerously low or additional compression of existing fractures which can be equally damaging. Okay, so medications, anabolic medications specifically teraparitide may be prescribed, though a significant number of our respondents chose not to take medication, likely because there is that natural recovery period after weaning. Teraparitide is the drug thought to be safest for those who would like to pursue future pregnancies as antiresorptives such as bisphosphonates could impact future fetal skeletal development. The research on this is incomplete. Braces and assistive devices are used to immobilize the spine during healing or to support mobility in the case of canes or walkers which may be used. In some cases, as with the use of a back brace, it seemed from the experience of our survey respondents that there was no clear consensus among clinicians about when to use a brace. So out of our respondents with 12 or more fractures, none wore a brace while half of those with one to two fractures did wear one. So there seems to be not a clear consensus on the use of the brace. Majority of our respondents did pursue physical therapy or physiotherapy and about a third of those went for a year or more, so it can be a lengthy process. But to talk a bit more about impacts on mobility. The long-term impacts on mobility can really be quite devastating for a new parent. For the 43% of our respondents who could not care for their children alone within six months of fracturing, this means they had to put together a support system out of family, friends, paid support structures if possible for in-home care during the period where they were healing and unable to care for their baby or other children alone. The reported gap among our respondents in support was really striking. So almost 20% of respondents said they never stopped caring for their children by themselves. But the vast majority of those said that they were not ready for it and it caused additional pain when they were trying to heal. Overall, almost a third of our respondents said they were forced to resume certain activities before they were ready and it was painful. Respondents noted feeling alone and having to arrange for care for their children and for themselves. And I think this is where a holistic team-based care approach could really help tremendously in helping people to craft these support structures. When it came to support, respondents reported that the International Support Group in which we launched the survey was almost as important to them as a partner or spouse. This indicates how important it is for people with rare diseases to find others who can truly see them and understand what they're going through. There's also a desire to share, validate, and learn from how others are parenting with the condition. So how do you get your kid in and out of a crib or a grocery cart? How do you manage night feedings? What about things like bathing children or helping them in the bathroom? I know for me, and these are some photos from my own recovery and adventures in adaptive parenting. One of the things that led me back to the support group frequently was that shared knowledge grown from real experience. That was something I couldn't get from any of my clinicians or from my family who were struggling through this alongside me. So I was grateful for that. Before I talk about this table, I want to note that 35% of our respondents, so over a third, had hoped to have more pregnancies but have chosen not to because of their PLO diagnosis, while another 16% are waiting to see how their fractures and bone mineral density improved before they make that decision. But here what we're showing in this particular chart are the 28% of respondents who are planning for a possible pregnancy and the 15% of people who've already had an additional pregnancy since their diagnosis. And the notable changes, as you can see, in approaches to pregnancy after PLO, whether it was planned or actualized included choosing not to breastfeed at all to limit that bone mineral loss, to use DEXA scan right after birth to inform decisions about breastfeeding or just to think about course of treatment following pregnancy. Some chose to seek out clinicians who had worked with high risk pregnancies in the past or to have a scheduled cesarean. I want to share this quote which is taken from the free text responses to our survey. We asked people to talk about what they wish clinicians would have known or done differently in treating them and their PLO. And I think this quote just really speaks well to the impacts of delayed diagnosis. So this person writes, I was continually told my pain was due to incorrect breastfeeding posture. I was told back pain is normal after pregnancy. This made me really question myself, if this is what all mothers endure, then why can't I handle it? What's wrong with me? Am I really in this amount of pain? Maybe it's not as bad as I think. You feel like you're losing your mind. Meanwhile, I couldn't lift a cup of water without pain. Trying to pick up my newborn resulted in excruciating back spasms as did simply getting out of bed. I could not lift my arms to wash or brush my hair, etc. I wish one of the medical professionals I saw during this period would have stopped and asked me about my pain. Not one asked me how severe it was and how it was affecting my daily life. Surely had they listened to the things I couldn't do, they would have asked for tests. So as I mentioned earlier, delays in diagnosis are extremely common with PLO. And only around a quarter of respondents reported that they were diagnosed within two months of their first fractures. But over a third of respondents had seen a chiropractor prior to their PLO diagnosis and over half had seen a physical therapist. Some of these respondents reported having been directed to do exercises or having been given physical adjustments that are contraindicated for acute fractures or low bone mineral density. So these delays have real consequences and could cause not only increased emotional distress, but further fractures or structural damage. An expression you sometimes hear in medicine is when you hear hoof beats, think horses not zebras. Many of us who were eventually diagnosed with PLO were worked up for the zebras, which include bone cancer, slipped discs, but very rare diseases are more like unicorns. And so even when we're thinking of horses and remembering that zebras are possible, the unicorn needs to be kept on the table. Someone's going to be the unicorn, which I can say from personal experience. And I'll turn it back over to Susan Rachel to talk about medical trauma and the conclusions of our study. All right. Thanks, Madeline. So what I want to say here is that as a provider, as a midwife, I certainly have witnessed among my colleagues the tendency to want to clear the board and that many medical encounters are often really transactional. And further, that people are frequently dismissed if they present with confusing symptoms or psychosocial complaints. You know, sometimes we have this way of just wanting to check the boxes on the list or in the electronic health record. Sometimes we don't have the time or the knowledge or the skills or the resources to engage in follow up. When Madeline first asked me if I'd ever heard of this condition, I've been a midwife for almost 30 years and I said, no, never, never heard of it. So, you know, we have to take into account the long term impact that this can have on mental health. So 37% of our respondents did pursue some sort of mental health counseling. And some of them noted in their comments in the free text that they had PTSD and depression and even periods of suicidal ideation and that many felt really lonely and isolated. An overwhelming majority of the respondents said that they were dismissed when they first presented with their symptoms and even used words like, you know, we were begging for help or stating that they wish that anyone had taken them seriously or really listened to them. And several reported that their pain or their osteoporosis, in fact, was interpreted as psychological or that they were blamed for doing something wrong, even not drinking milk in childhood. And were told that they were being selfish because they were so focused on their own pain instead of focusing on their babies. So, in conclusion, there were a number of things that we looked at. One of the key features is that early diagnosis is key to preventing long term sequelae and long term suffering and in fact further fracturing because if they're not, if it's not diagnosed and treated and there's not a large approach from every angle, they're going to have significant changes, including height loss and long term pain and spasms. Another thing is that coordination of care across teams and access to home care is going to vary a lot in internationally and in terms of individual communities. The ability of access to long term care for those with prolonged, although temporary disability is really inconsistent. And we also were thinking a lot about the cost for home care for long term physiotherapy for childcare for those who needed it, which can be a significant burden for some families and individuals. About pharmaceutical treatments, many of these pharmaceuticals are actually not covered by insurance, at least in the US, prior to menopause, because they're considered for people with osteoporosis who are often postmenopausal. And finally, most of the participants in our survey talked about having to self advocate and coordinate their own care, which was of course terribly stressful while they were undergoing pain and having difficulty with just the most basic activities of daily living. We hope that bringing attention to this rare but significantly disabling condition will guide midwives and other clinicians in their approach to working on teams and to communication, and of course importantly to unicorns. So these are our references, and we are ready for your questions. Wow. Thank you so much, Madeline and Susan Rachel. Thank you so much for that beautiful presentation. Thank God for VIDM. That's how I got to learn about this condition for the first time. Like I've never heard it before. I don't know if any other person has that kind of experience. So thank you so much. I don't know if we have questions. We can put it in the chat box. We still have some few minutes to take questions. If you have questions, please, let's put it in the chat box. And let's also love up on our speakers. Let's show them some love for bringing us this beautiful presentation. Thank you so much. But I have a question for you. I've not seen any question yet, but when I see it, I will read it out for you. So, but I have a question because this is a midwives conference, or we expect that a lot of our participants are midwives. So what steps can midwives take to help identify people at risk for PLO, whether they're in pregnancy or after pregnancy? You know, for some like me, even I'm a midwife, I've never even heard about it or something. So, but how can midwives help to identify these cases? I think one of the most important things is to really pay attention to the history taking because there are going to be things in someone's history. It reminds me a little bit about something like the symptoms of a thyroid disorder. There are things that don't seem like they would have anything to do with each other, and yet they might. So if you have someone who reports that they were bulimic as a teenager, and then they were on depoprovera when they were in college, and maybe they have not the greatest diet, or they have difficulty processing gluten, or maybe that they have had minimal trauma fractures. So when you're taking a history kind of stringing together those things that ordinarily you wouldn't necessarily think of, but being aware of things like that that can contribute to going into pregnancy with lower bone density than you might expect for a healthy young person. Other things, you know, one of the things in the research that they found was that, you know, being athletic as a child, or as a young person versus being sedentary, someone who's very slender, just thinking of things that again ordinarily you wouldn't think of as going together. Madeline, do you want to add anything to that? I think you covered it well. I think it's also noteworthy, you know, we covered a little bit some of the medications. So medications that people sometimes take for MS, steroids, long-term steroid use correct, that can be something that can cause lower bone density. And then, you know, yeah, so that's great for prevention. And then I think also just taking back pain seriously really early on when it's reported, whether it's in pregnancy or postpartum, really looking at things like ADLs and how the back pain is impacting ADLs. Because I think, I mean, from my own experience having fractures, the impaired mobility was more severe than it would have been with a muscular issue. And paying attention to what I could or couldn't do and how I could or couldn't move could probably indicate that it was greater than a muscular issue. Yeah, I think the thing that you really heard from our respondents was if someone comes to you, forget about the predisposing factors, if someone comes to you soon after birth or late in pregnancy and says, I'm having a sudden onset of excruciating pain, you have to take that seriously and don't refer them to a chiropractor, get some imaging. Very, very important. And we do have a question from Dr. Pitter, which is a really interesting question. Dr. Pitter is asking if there are any particular race, racial groups or ethnicities who are at greater risk. And honestly, I would say we don't really know because there's so little research and when when I was doing my literature review for the write up of this study. One of the things that really was impressive was that there were many articles that would just have one case or there'd be an article with two cases. And, you know, there wasn't much, although several of them were out of Asia with an Asian population, but I think that's random. I think that the presentation of just a few cases can really inform us about that. I think it would be other lifestyle factors and previous health conditions. But that's the guess we don't really know. Thank you once again Susan, Rachel and Madeline for this beautiful presentation. We have comments and people are sharing feedbacks in the comment section saying that thank you for sharing the light on this very important topic and we still need a lot of research in this area. Thank you so much.