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#155 - Dr. Paige Church - 👩‍⚕️ Thriving with disability


Paige Church Incubator Podcast

Hello Friends 👋

We're thrilled to announce the release of the latest episode of The Incubator Podcast! 🎉 This time, we bring you a deeply insightful conversation with Dr. Paige Church from Boston Children's Hospital.

In this episode, Dr. Church shares her journey of practicing neonatology with a disability, providing a unique and powerful perspective on patient care. Her experiences have not only enriched her approach to medicine but also influenced how she counsels families during some of their most challenging moments. Dr. Church delves into how navigating through her career with a disability has impacted her trajectory, affirming that our individual journeys bring invaluable insights to our professional lives. Don’t miss this remarkable story of strength and compassion in medicine.


Thank you for your continued support, and as always, we love hearing your feedback and thoughts on our episodes.

Happy listening and happy Sunday! 🌞


You can contact Dr. Paige Church via email here


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Some of the articles mentioned on today's episode can be found below 👇

Understanding the family context
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Download PDF • 687KB

A personal perspective on disability
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Download PDF • 52KB

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Short Bio: Dr. Church was first a graduate of the NICU at the University of Vermont and then a few years later, became a graduate of the University Of Vermont College Of Medicine. Her pediatrics training was completed at the University of Chicago, focusing on inner city medicine and complex care. She then completed a combined fellowship in Neonatal-Perinatal Medicine and Developmental Behavioral Paediatrics at Tufts University School of Medicine in Boston. She is board certified through the American Board of Pediatrics in both Neonatal-Perinatal Medicine and Developmental Behavioral Pediatrics.

Dr. Church recently relocated to Boston from Toronto. She is now at Beth Israel Deaconess Medical Center and Boston Children’s Hospital, where she works as a neonatologist and developmental behavioral pediatrician in the Neonatal Intensive Care Unit and in the Growth and Development Support Program (GraDS clinic). Her academic interests include developmental care, long-term outcomes of babies who were cared for in the NICU, systems of care, spina bifida, and disability.

Dr. Church is married to Erik Church and they have a daughter, Izzy who is in high school.

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The transcript of today's episode can be found below 👇

[00:00:00] Ben (2): Hello, everybody. Welcome back to the incubator podcast. It is Sunday. We have an interview scheduled for you today. Uh, definitely. And I had the pleasure of chatting with Dr. Page. Church. Uh, who shared with others, uh, who shared with us, her experiences? As a neonatologist and a Dell mental pediatrician. And how, um, her personal history and her personal, um, history with disability has impacted her career. If you are not familiar with Dr. Church, um, she, um, was first a graduate of the NICU at, uh, the university of Vermont. And then, um, she then went on to become a graduate of the university of Vermont college of medicine. Her pediatrics training was completed at the university of Chicago, focusing on inner city medicine and complex care. She then completed a combined fellowship in neonatal perinatal medicine and developmental behavioral pediatrics at Tufts university school of medicine [00:01:00] in Boston. She is board certified through the American academy of pediatrics in both neonatal perinatal medicine. And developmental behavioral pediatrics, Dr. Church recently relocated. Um, To Boston from Toronto. She's now at Beth Israel, Deaconess medical center and Boston children's hospital, where she works as a neonatologist and developmental behavioral pediatrician. In the NICU and in the growth and development support program, her academic interest includes a mental care long-term outcome of babies who were cared for, who were cared for in the NICU systems of care, spinal bifida, and disability. Uh, she is married to Eric Church and they have a daughter Izzy who is in high school. Please join us in welcoming to the show Dr. Page church.


[00:01:46]


[00:01:47] Ben: Dr. Paige Church, thank you so much for being on the podcast with us this morning.


[00:01:52] Paige: Thank you. It's good to see you.


[00:01:56] Ben: It's good to see you too. Um, Daphna, do you want to get us started?[00:02:00]


[00:02:00] Daphna: Yes, well, um, we have a lot of things to talk to you about, but the first thing we always talk about, no matter what, um, is just wanting to learn a little bit about your neonatology journey, um, and you may disclose some things as part, you know, why, why neonatology for you?


[00:02:20] Paige: Um, that's a great question. So, um, I think for me, uh, very quickly, I mean, I think I almost knew automatically I wanted to do pediatrics and that was related to my own medical history of being in the hospital for a lot of my childhood and my young adult life and feeling like I needed to make something come of what I had experienced.


[00:02:41] Paige: Um, and then why neonatology specifically, I think as I got into pediatrics, I fell in love with it very, very quickly. And Um, you know, I, I had been in the ICU as a patient, so I, and I knew that story. Um, interestingly, when I did my rotation as a medical student, the nurses all gathered me in and protected me, because it turned [00:03:00] out some of them had been my nurse.


[00:03:01] Paige: Um, so, uh, that was sort of a bit like coming home and I felt really like that was a really neat full circle. And I think I loved the science and I loved the medicine of it. I really did. I mean, I think from a absolute geek out nerd phase, I found that part really, really my favorite.


[00:03:20] Ben: And so you're mentioning your your personal medical journey and uh, you've written a beautiful piece I think it was in 2017 in jamapeads called a personal perspective on disability And we're going to link it in the in the show notes and I invite all of our listeners to check it out but For the people who are not familiar with your story, you can disclose as much as you like, but can you tell us a little bit about what were those medical obstacles you faced as a, as a child?


[00:03:48] Paige: So, um, I was born with a form of spina bifida, um, which is called a lipomyelomeningocele, which is a closed neural tube defect. And in today's world, it would be, it's a big deal, but it wouldn't have [00:04:00] been nearly, um, I think the same level of complexity as it, as it was when I was born, partly because when I was born, there was no ultra, I mean, this makes me sound really old, but there was no ultrasound.


[00:04:10] Paige: There was no imaging. So when they went in to explore the lipoma, they transected part of the cord. Um, so as a result, I have, um, probably more medical complexity than I would have if, if it had been handled by modern. standards. Um, and as a result of that, I have some lower extremity weakness for sure. I, I try to exercise every day and, um, I have a neurogenic bladder and bowel that, um, has been a bigger issue for disability than, than anything, but nothing you can see.


[00:04:39] Daphna: Hmm. Hmm.


[00:04:40] Ben: That's, thank you for, thank you for, for, for sharing that. And so then going back to, um, I'm just curious as to when you were discussing your choice of specialties, I think you could have easily picked a specialty that is not as demanding both on the mind and the body. [00:05:00] I feel like, well, I'm not, I'm not disparaging any other specialty, but if you think of general pediatrics, if you think of, I don't know, my father's an endocrinologist, right?


[00:05:09] Ben: As an endocrinologist, he never had to rush anywhere, right? I mean, he could always get there. In due time, right? I mean, so there are specialties where, where you have more control over your day to day life when neonatology really is, is on the other extreme. And so while I recognize your, your passion for neonatology and how interesting this, the field is, was that ever a consideration when you pick the specialty as saying, well, am I really going to be able to do this considering my set of circumstances as well?


[00:05:39] Paige: Yeah. Yeah. Uh, and it's interesting. My father is a physician and my father tried to sit me down and, and have a real heart to heart about what are you doing? Why are you doing this? Um, uh, and it, you know, at the time I was younger and certainly wasn't disclosing any disability. And so it wasn't flagging as anything that anyone saw as an issue.


[00:05:59] Paige: So [00:06:00] from my mentors and stuff, everyone was like, Oh, do it, do it, you know, of course. Um, I think my father had a better perspective on the long game and, um, and I, as a result, I ended up doing a double boarding in neonatology, but I combined it with developmental behavioral PEDs. And, um, and my father just helped me to round out my interest in, and one of the things I was very interested in was not only what happens to the babies in the ICU, but what happens to them when they go home.


[00:06:24] Paige: And that was from my own experience. And so then my dad was very helpful in saying, if that's your interest, why don't you round it out and get more information on that so that you have that flexibility to have your career ebb and flow as it may need to. And I think it was good advice. I think it was really good advice because, um, I do do a lot more developmental peds in the ICU than I do, you know, procedures and stuff now.


[00:06:48] Paige: I'd say in the last six or seven years, I've really pulled back from being as acutely involved, just because it's getting harder, and I see it now. And that's frustrating, and I get really angry [00:07:00] and annoyed, and then I just, I vacillate between that and acceptance, and then, you know, the waves come and go.


[00:07:06] Daphna: Hmm.


[00:07:07] Ben: I'd be curious to talk to you a bit more about that, and, but before we do, I'm, I'm curious about whether this desire to pursue a career in intensive care, is it something that you needed to prove to yourself as well? Is there this sense of I need to not, I, I don't know. Maybe it is a sense of showing others, but I don't think, it doesn't seem reading your work, it doesn't seem like this is your type of personality more than something about, I need to demonstrate this to myself that this, I can do it.


[00:07:33] Paige: I think so. I think so. Um, you know, uh, Um, it's, it's, I've always been very careful because I, there's nothing, there's nothing obvious when you look at me. You can't necessarily see that there's, there's subtle things that are happening. Um, and that's what I wrote about in my, um, in my editorial is one of the things, but I think that in some ways growing [00:08:00] up like that, it becomes, you're constantly trying to prove to yourself that you can do things.


[00:08:08] Paige: sometimes at great personal expense. And there are a lot of things that I regret, um, that I didn't accept sooner. Um, but because you don't have any outward sign of it, the expectation from those around you is you sort of get swept into this stream of just trying to paddle faster and harder and keep up.


[00:08:25] Paige: Um, and, and I think that's where I ended up. And it, to prove it to myself and because nobody around me knew anything. And so you just sort of listen to the people you admire and you respect and they advise you to do things and you do them and you don't really think about the long game.


[00:08:42] Daphna: I am, we really appreciate your candor. You know, obviously I'm sure this is, this is a lot of personal information and actually in, in um, When you've given other talks and in your paper you, you mention, um, how you didn't disclose a lot of things throughout your [00:09:00] medical training, um, because of this, you know, quote unquote, kind of hidden, uh, disability.


[00:09:06] Daphna: And, um, for some backstory for the listeners, your interview, this interview, was actually requested by a number of people. So we know that there are, um, people in our community who are struggling with their own medical issues, and that ranges For a number of things, um, and I think they too are struggling with how to navigate supporting themselves and their kind of professional career goals, um, and, and I think disclosure is a complicated piece, um, maybe you can, do you have any, any words of wisdom about that in particular or how, how you became more comfortable with disclosure and things like that?


[00:09:50] Paige: uh, I don't know. I don't know. I mean, a couple of things. One is that I have been approached by several younger trainees, residents, medical students. [00:10:00] Who are really struggling with disclosure and, um, fear of retribution. And that makes me very, very, very worried about the state of our field. Um, I, and maybe I didn't disclose for years because I was too afraid of retribution.


[00:10:15] Paige: I never really let it, I think, get to that level of awareness because that would have been maybe too hard to accept. I don't know. Um, but, uh, it's tricky. And Neonatology, because we work... And I think that And we rely on our colleagues. If one of us falls, the other has to step in. And so, to some degree, disclosure also becomes, at least for me, and I'm only speaking for me, it became a worry of I was going to be then viewed as, um, less reliable or, um, less capable as my peers.


[00:10:48] Paige: And I think I struggle with that. It ebbs and flows. You know, it still ebbs and flows for me. Um, Um, I think the harder thing has been to say that I still have value. And [00:11:00] that has taken years to come to where I can say, Yeah, maybe I'm not running to the delivery room anymore. And maybe that's not, uh, and that is really valuable and it is important.


[00:11:09] Paige: And there's no question about that. But I think I found a couple of mentors in my, um, before I was here, I was in, um, in Toronto. And, um, I had some really great mentors who, Um, quietly said, you know, just because you're not doing X, Y, or Z doesn't mean you're not an academic neonatologist. You have so much to offer and you just have to speak.


[00:11:31] Paige: And that's really where that paper came from was, you know, someone gently encouraging me to use my voice, but reminding me that my voice wasn't going to be heard very well if I didn't also share the personal aspects. And so, you know, I think slowly it just, you know, it started marinating. I think the other thing for me personally with the disclosure was, um, I don't know if I was ready.


[00:11:53] Paige: I don't know if I, days where I regret it. Um, but for me, it got to the [00:12:00] point where I really felt like, uh, I was living a very, very significant lie. Um, the stories were starting to add up. Um, I was getting increasingly frustrated with, you know, the things that I could and couldn't do or the things I was having to ask for coverage on. And I just, I think I just got exhausted. I was so not authentic and I sat and I wrote that at a Christmas, like right after Christmas at our, at our cottage. And my husband was giving me grief cause I was working and then I didn't show it to him or anybody else for about six months. I just sat on it and I just, I felt better having just put it out into like my computer.


[00:12:37] Paige: Um, and then I shared,


[00:12:39] Daphna: it was cathartic.


[00:12:40] Paige: exactly. And then I shared it with one colleague who, I was asked to do a consult on a case, and it was a spina bifida case, and I had to cancel a meeting that I had desperately wanted because I admired this, this colleague very much. It was, um, Dr. Janvier, um, and she sent me a paper about spina bifida just, you know, just to help me do my consult, which was incredibly gracious because now [00:13:00] I'm canceling a meeting that I've begged for, and then here she is offering me a paper to help me do a better job at the meeting, and I was like, oh, this is so embarrassing.


[00:13:08] Paige: Like, I, I appreciated the paper, but I was like, this she doesn't understand that part of the reason I have to do this is because I really feel like I have this moral obligation to see these families. And so I ended up sending her the editorial and she was the only person who saw it at first and no one had ever seen it and I had never met her.


[00:13:24] Paige: And, and she sent me a sentence or one sentence back published now, and then JAMA. And that was the beginning of it. That, and so then I had to sit with my husband though, and I had to sit down and I remember we sat on our dock at our cottage up in Northern Ontario. And he looked at me and he said, are you ready?


[00:13:39] Paige: He's like, once this comes out page, you can never put it back in. And it affected him too, because you know, the complicity was professional, but it was also his, his life. You know, we had things like not going on hikes when he had a fan, a business meeting and everybody else, all the spouses were going out on a hike and I wouldn't go.


[00:13:58] Paige: And I knew that the [00:14:00] reputation I probably had was, you know, prissy, you know, nerdy would sit by the pool and read a book instead of going for the hike. And what I couldn't disclose is I can't go on the hike because I'm not so sure I can be that far away from a bathroom for that many hours and, and so when we decided, and I would say it was definitely a joint decision between him and I, I think for him it brought a lot of comfort because I think it let him live a more authentic existence where he could say, listen, she can't go.


[00:14:25] Paige: She has this medical problem. This isn't her thing. She's still, you know, really keen on hanging out, but it's not going to be doing that. Um, yeah. So it, it was really a slow, slow process. I would say years in the making. Um, and I worry very much about the younger physicians I see behind me who are still struggling with it.


[00:14:45] Paige: And I'll tell you, when I decided to leave my job and come back to the U. S. and work, nothing against where I chose to work. They've been great, but... There was this moment of, Oh my God, like I had this great job that was very accommodating, but is anyone else going to be that [00:15:00] kind and not accommodating? And, and you feel this sense that, that they've done you a favor.


[00:15:05] Paige: And, and, you know, I was talking to a colleague, Dr. Amy rule, and we were talking about the golden handcuffs. You know, when you find a job that's, that's willing, willing in air quotes to give you accommodations, you feel such gratitude. But part of me is like, is that really what we should be? grateful for or is that just something that should just exist and we should welcome the different types of people that can do these fields of medicine and bring a very different perspective and it can have some value even if it's not the traditional mainstream value.


[00:15:35] Ben: Yeah, I was going to ask you exactly about that because transitioning jobs after after this paper was published is is another obstacle to overcome. So I'm glad you touched on it. And it's funny that you mentioned that the paper stayed in a folder because Annie Janvier, who we had on the podcast mentioned that when she was writing her book, it was also in this sort of Folder on her computer.


[00:15:55] Ben: And so it looks like we all have that folder on our computer with some work. That's probably yeah[00:16:00]


[00:16:00] Paige: Probably needs to come out.


[00:16:01] Ben: That's right. That's right


[00:16:03] Paige: Yeah. Yeah. And I would say that after I did disclose, sorry, uh, I was turned down for repeated. Um, like I had been, you know, asked to interview for different chief jobs or different opportunities at different hospitals. And all of a sudden those came to a screeching halt, um, after that paper.


[00:16:18] Paige: So there has been some effect.


[00:16:21] Daphna: That's frustrating.


[00:16:23] Ben: What do you think that says about how? Unilateral and sort of our how our vision of the job really is like really has to fit in in a box, right? I mean, we don't seem to be have the ability to see our job being provided in a variety of colors where you could you could And the end product could be identical and could be done in a way that we're not so familiar with and yet we're not really able to accept that I mean That's just and and especially for us as neonatologist where we're constantly counseling families about how The brain of the baby will find a way to [00:17:00] get the task done by just rerouting those those nerves and those neurons and yet we're not really able to to to see a little bit of of um, Of diversity when it comes to uh to our own profession


[00:17:13] Paige: I hope, I hope we're coming to a place where that's going to change. I really do. I mean, I also am very mindful and respectful of the physical demands of our job. And, um, I don't, I, and I don't know, and I don't know if I will ever have the answer. I don't know how you get trained to do our job if you can't do it physically.


[00:17:31] Paige: Like, but that being said, you know, there are surgeons, you know, the spina bifida community when you, when you're on the inside, like there's little stories you hear and, you know, there was a surgeon in Michigan, I think she was in Michigan, who was probably 10 years older than me and she was a neurosurgeon.


[00:17:46] Paige: And so when you hear of those little glimmers of how did she do it, she, she was, you know, she sat on a stool and operated. Um, so are there ways, you know, there was one way someone creative saw that she had incredible [00:18:00] dexterity and, and even though she couldn't ambulate very effectively, she was, um, or without assistance, she had an incredible skill. How do we groom that? I don't, I don't know if I have an answer because it extends, the trickle down is way into medical school and, and even who we select for medical school. Um, but when you hear of those people and I know there's another surgeon in the Midwest who's, um, you know, younger than me and so I know that there are people out there.


[00:18:27] Paige: I also know that they probably work very, very hard to accomplish what everybody else accomplishes maybe with a little less physical effort. So I don't know if I know the absolute answer to this. I really don't. Um, I've been trying to read and understand and learn as much as I can, but then I don't, I still don't have the answers.


[00:18:49] Daphna: Um, I, I'm intrigued by, you know, like you said, these job opportunities and I wonder, you know, why [00:19:00] administrators or, you know, department leads, um, take that onus on themselves about deciding what somebody can and cannot do. Um, and, you know, how should that, how should that conversation go that says like, You know, Paige came, and Paige, uh, feels comfortable with the responsibilities of the job and she feels like, um, you know, she can do it.


[00:19:23] Daphna: So who are we to say that she can't do it?


[00:19:25] Paige: Yeah, I haven't really, I mean, maybe I'm just more senior now that I, I, I've never wanted to be in a position where someone tells me I can't do something. So I've definitely tried to be mindful of limiting myself to a degree. Um, In terms of those jobs that were, that sort of, I didn't get any more calls.


[00:19:43] Paige: How about that? It was more around me saying out loud, you know, after that I had surgery, in, um, probably about eight years ago, it made it really hard to be on call at night. Like, it made it really, really hard. Um, and, uh, I tried it for a couple years and I actually felt like, you know what, this is bordering [00:20:00] on unsafe.


[00:20:00] Paige: Like, I'm not comfortable with what I'm doing. Um, my group in Toronto was great. They were like, no problem. You're out. We don't go cover it. Um. But when I was like the, the headhunters, they were like, yeah, you can't be, you can't be a division lead if you're not willing to take call because then you won't represent the group effectively.


[00:20:16] Paige: You're not representing the experience of the group. And I was like, okay, that's fine, whatever. Um, and then, but then it does make you realize that you, your job opportunities are all of a sudden much less and there's no taking that back. Um, uh, and then when I interviewed down here, I mean, I got lucky. I found him and, but this is ridiculous.


[00:20:33] Paige: I got lucky. I mean, I am very lucky. I think he's a, it's a great division. But that's the sense is I got lucky because he saw that I had something to offer instead of, and that's my own issue. That's not his. He was very gracious and he said, we think you have a lot to offer this division, blah, blah, blah.


[00:20:49] Paige: But the perception in our, and I think in people's minds that are going through this is that we still feel lucky when we find someone rather than that that should be the norm. And maybe I'm only speaking for myself.[00:21:00]


[00:21:00] Daphna: And it's so interesting because for one, you have a number of professional accolades, which certainly make you, um, worthy of the job. And, um, I. I wonder, you bring a new perspective to the job, right? That not all of us have, in particular in the work we do in neonatology, where we do have children, um, who will develop medical complexity.


[00:21:27] Daphna: And so. I, you know, I worry that, you know, by not broadening our community, diversifying our community, we actually miss an opportunity, um, to have people that, um, can really connect with families, can really help guide families through some of these logistical problems that I wouldn't even fathom because I don't deal with them every day.


[00:21:50] Daphna: Um, and I, I wonder how we can incorporate. It's that narrative, um, into the conversation.


[00:21:58] Paige: Yeah, I agree. I [00:22:00] mean, um, I think. That, uh, I mean, having that dual fellowship was in, probably, you know, everything's been a step. I mean, I'm so lucky. I feel like I've been, today's a good day. I, generally, I feel pretty lucky that I've had this condition and that it's brought me, it's given me a focus and a direction and a, and a career path that I probably wouldn't have ever had without it.


[00:22:21] Paige: Um, the developmental peds add, added aspect, added a perspective around disability and, and, um, perception of it that I didn't have. As a neonatologist and um, I think it's really important and I think it, it, it has, it has a value that really needs to be further incorporated into neonatology to a greater degree because we counsel about conditions and we are usually the first people for those families to meet that are introducing the idea of this condition to them and yet our knowledge around life with disabilities and function and stuff like that is, it's not what we're trained to do.


[00:22:58] Paige: So, it is this weird [00:23:00] responsibility that we have, and yet we have no lived or professional experience in it, you know?


[00:23:08] Daphna: hmm. We, um, we just reviewed actually a handful of papers about, um, physicians perception of disability, like across the board, but particularly in pediatrics, compared to the families that are living with disability. Um, and I wonder if you can speak a little bit to that, um, particularly, you know, I'm sensitive to the fact that people who have this kind of hidden disability may overhear commentary that you know, nobody, you know, they didn't think it affected anybody in the room, but it certainly does.


[00:23:43] Daphna: And you know, our language and our narratives around disabilities.


[00:23:46] Paige: Yeah. Oh yeah. That's, that is like, uh, my life's passion. And anyone listening to this podcast, like, please approach me, because I have so many ideas of where we need to go with this. I just need to carve out like another 30 hours in the day.


[00:23:58] Daphna: Sure.[00:24:00]


[00:24:00] Paige: Maybe, maybe a few more. But, um, I, you know, I lived this. I sat through staff meetings where people would be presenting a case that was coming in and, you know, and I'd rather be dead than have that and, and I'd be like, wow, they were like, they were like my roommate in the hospital.


[00:24:16] Paige: Like, okay. You know, or being called on vacation and being told that the way I counseled a family with a baby with a You know, periventricular hemorrhagic infarct was inappropriate because um, the kid was still alive and, and they, they were going forward. And I was like, but they understand, they understand this child probably going to have cerebral palsy.


[00:24:38] Paige: They understand what that word, those words mean. Like I didn't just say the words, I described what it would look like that the child would need a walker, that the child would maybe need feeding assistance, that the child's learning might be affected. Like we were, it was going to be hard to say. And that child went on to grow up, and she has a very happy life, and she's loved, and she's in school, and she has some learning [00:25:00] needs, not much.


[00:25:01] Paige: She has some mild motor issues that need to be addressed. I don't think the family felt surprised. I felt like they were given an important choice, and they made it, and they are very happy with their beautiful baby. Um, so, I do worry about the state of that. I worry about our lack of lived experience with it.


[00:25:21] Paige: You know, I think... Yeah, yeah, as fellows, we go to clinic and we have to show up and we do our, you know, set notes and whatever. It's just, I worry that that's not enough to give you a sense of the richness of people's lives. And, and, and I don't know, I, I, I think that we have a lot of work to do on that front.


[00:25:39] Paige: Um, we've done a lot of work around, um, equity and awareness around that and diversity. Um, and being very aware of the biases that exist around our care and how it impacts our care and the morbidities that our babies experience, but we haven't even gone near this one. Um, and it's, it's really interesting to see how it's, it's sort of not, not [00:26:00] hitting us quite yet.


[00:26:01] Paige: And I, and I hope someday it does. I really do. Um, Lisa Leone's done some really interesting work with this. Um, I don't know if that's one of the persons that you, um, thought of when you were doing this or, I mean, Annie and Mailou has done some great work on this as well around parents perceptions. I think we're just starting to chip away at this, and I think there's a lot of work still to be done.


[00:26:19] Paige: But the hard part is, when you inform parents, what we say shapes realities. So, you know, um, what I, what I'm not clear on yet is how, uh, I think we need to do a lot of work with how we offer our information. Yeah,


[00:26:37] Ben: This is very interesting. I think you are, you are so right about, about, about, about this and how we counsel families, I think to me, I think a little bit like you, the, the time spent in the developmental clinic was tremendously helpful in getting an understanding of the array of how development. Um in its different shapes and forms and and what does development look like practically on [00:27:00] the ground uh for babies with Common pathologies that we see in the NICU and and it's help and seeing hundreds of babies at one year two years three years Has helped me given families better counseling when it comes to what we're seeing in the NICU in the first few weeks of life and And while I recognize that, um, your situation gives you a unique ability to provide counseling to parents.


[00:27:24] Ben: I am wondering if you think that Your personal context is while it can be very positive in certain cases. Is it always something that helps you provide adequate counseling? Or do you think that maybe you are biased on the other end of the spectrum? And I'm trying to be devil's advocate here, obviously, but, but I think, um, Maybe people can look at you and be like, look, she's bright.


[00:27:50] Ben: She's, she's, she's accomplished. Maybe that's what we have to hope for when in truth that may not be in the cards for their infant. So how do you navigate that?


[00:27:57] Paige: Those are good questions. I think [00:28:00] one of the first things, one of the biggest, well, one of the concerns I had when I released that JAMA editorial was, Not only that it was going to be out professionally and that my colleagues were gonna, were gonna read it. Um, It was also that families were gonna read it and how was I going to be able to counsel families and not have to disclose and not, and not have them look at me and say well if that's the way it is for you because what we know about spina bifida in particular is it is very, very different.


[00:28:24] Paige: I can have the same lesion as someone else and our presentations can be quite different. Um, so, uh, That has always been an element of caution for me is, is just when I meet with families and I am pretty sure in Canada I did all the consults for all of the women getting, or all of the individuals who are gonna get the in utero closure option in Canada and I'm pretty sure that, I had originally said why don't I just do Ontario because that's what I'm gonna see and then all of a Sudden the New Brunswick and all these families and I'm pretty sure they were all talking and they were all like, have you left?


[00:28:57] Paige: So, and, and, and I was willing to sort of let [00:29:00] that go and, and, and I, you know, I respect those families tremendously and I understand the desire. I know my mother did the same thing when I was a child. She was, she knew of a lady and we used to go to her bookstore and my mom would sort of ask her questions.


[00:29:13] Paige: So I understand it and I, and I respect it. I did find it a little exhausting. It felt like a lot of pressure. Um, and I always dispelled the myth when I started. I said, you may have looked things up. We're going to talk about important things. I don't know if you've Googled me, but, um, I said that usually at the end, but I said, I want to be clear.


[00:29:30] Paige: What I've said is what I want you to focus on, not, not your perception of what you've been reading. Um, in terms of, um, uh, you know, the impact in the, on my practice and stuff, I do worry about that a lot. I worry about that every day because, I do see things from a, from one perspective, but I worry that that, that might be too optimistic or it might be


[00:29:55] Paige: too jaded with medicine and, and, you know, I've also been on the other side of the medical [00:30:00] field and there's parts of it that are really frustrating.


[00:30:01] Paige: And so I understand when parents get frustrated and angry, why? Because usually there's some reason. Um, so I do constantly try to balance it out and check it and say, what are all the forces here and how can I. Make sure that I'm not swinging too far over. Occasionally I've asked not to do it. So, um, if it's a, like, The consult that actually drove the editorial was a consult I asked not to do.


[00:30:27] Paige: It was my exact lesion in a twin pregnancy that she was asking for a late termination on. That's, uh, that's way too close to home. Um, and because it was right before the holidays and there was no one else to do it and, and, and I ended up having to do it but I did disclose to her that there was a potential bias.


[00:30:47] Paige: Um, because I felt that that was not fair to that family, to have such an important conversation about their choices without them understanding the perspective that was coming into the room. Um, and I actually made them disclose to the parents before [00:31:00] I came and the parents then still asked to meet with me. then I went. But um, it is, you know, I definitely try to be very mindful of, of stepping out of those discussions. And generally I will avoid the end of life or the end of pregnancy conversations if it's around. anything close to what, what I have had. Um, but otherwise, I just, I, I, I, my husband says hope is not a strategy.


[00:31:25] Paige: I have worked very hard to, um, develop a, a way of counseling that is very neutral and, um, descriptive and functionally based and then, um, I try to help families identify values and then help them make decisions based on those values.


[00:31:43] Ben: Let me, let me push then on that, on that point a little bit further. You've mentioned earlier in the, in the episode, and you've mentioned this in, in some of the work you've published that, that disability is, is, is forcing you to go through ebbs and flows of, of being either a beat or sometimes a little bit down on your luck.


[00:31:58] Ben: And, and [00:32:00] I'm wondering how does that play on your counseling? Whether it is a day where you're like, you're not, you're not ready to have it. And some, or someday you're more optimistic. How do you internally check that before stepping out into the world?


[00:32:12] Paige: Yeah, I, you know, I think part of what's made it a lot easier is being, um, being able to feel more authentic. Like I'm able to be more transparent. Um, I think when it was all cloaked in a secrecy, I think my counseling was much more jaded and much more negative and, and, and frustrated. Um, so when I would get criticized for being too optimistic, I was like, really?


[00:32:35] Paige: Um, because I feel like I was just really negative. Um. Uh, you know, early, early, early in my career, it was very black and white. It was just sort of like, no one should ever have to deal with this. And then I started just walking away and thinking about what I was saying. And so, I think there is a value to being able to live openly and freely.


[00:32:53] Paige: I think it lets you say, you know, today's not a good day, you know. And, and you can say it, not to the family, [00:33:00] but to someone who's working with you. Or someone who knows you and then it lets you sort of park that and then you can hopefully go back in and focus on what you have to say, um, uh, but, um, it's, it's a constant, I'm constantly aware of it.


[00:33:16] Paige: How about that?


[00:33:18] Ben: Yeah, it's interesting how we don't tend to talk about this much where parents need to be quote unquote spoken to for something. And we rarely ask, is this a good time for the physician to actually take themselves and sit themselves down in front of the family? Maybe, maybe it is not. Maybe you are not in a position to be in, to be in that


[00:33:38] Ben: role. Yeah. To say maybe today is not the day I should be doing this. Right. And, and I've been dealing with no matter what your circumstances are, you maybe have been dealing with stressors at home and say, that's just, I should not be sitting in front of this family when this is this critical for them. We don't, I'm not saying that there is a right or wrong answer there, but I don't think we talk about this [00:34:00] enough.


[00:34:00] Ben: Um,


[00:34:01] Paige: you think about like with a 23 weeker, you know, you leave like a weeker and maybe something really positive has happened or maybe something really challenging has happened and then you pivot to the next thing and it's hard to not have that case be. case that, you know, like that's natural human


[00:34:16] Ben: yeah. Experienced bias type of


[00:34:18] Paige: Um, there was an interesting editorial or a little write up in pediatrics this summer. I think it was the summer. And it was about this idea of taking a bias break. And, uh, and I, I, I'm really interested in that. And I've actually really been trying to do it. And it's, I mean, I have biases. Um, but just sort of putting out with every patient.


[00:34:36] Paige: All right, what are my potential biases here? Like I saw, um, a woman, a parent yesterday. And, um. And she brought her baby in, and, and the baby's not extremely premature, it was in clinic. But has lots of, like, odd things going on, and, and I think she's been sort of dismissed by the medical system, and it's, no one's really hearing what she's saying, and she's a, you know, an experienced care provider of children, so she's not, like, even though she's only had two of her own, like, [00:35:00] she's had multiple experiences with kids in her career.


[00:35:03] Paige: And I went in and I said, I don't know what's wrong, but the fact that you're uncomfortable is really throwing me off my feet. Like, I feel uncomfortable. around, like, I, I, I get that something's not right and I get that you're frustrated and feeling it and I'm going to have to do some legwork and figure it out.


[00:35:17] Paige: Um, but I was able to sort of identify, I think other people have looked at her and been like nervous mother, you know, like you sort of create these narratives and they're not necessarily the fair narratives. And so I had to step out, go in the other room, sit down and look at everything and sort of say, okay, where are my potential biases?


[00:35:35] Paige: She does present. Maybe is more nervous, but like let's look at everything else. So why and and when I was able to do that I was like, okay, no something's We need to follow this through So I think it's an interesting practice to just sort of put your biases out on the and they're you know It could be all sorts of things but just put them out on the table and then try to be aware of them and navigate them more openly than to just sort of Knee jerk and the [00:36:00] hard part is neonatology.


[00:36:01] Paige: We have to knee jerk Like, that's what saves babies lives. So how do we balance that acute reactivity with the need for some mindfulness as well? I, I think it's, when it's a reactive moment, I don't think we have time for those things.


[00:36:14] Ben: That's interesting.


[00:36:15] Daphna: I, um, it's interesting that you are bringing up kind of this, the parent perspective. And I wonder what that says about our community. Um, when we talk, we're working so hard to consider parents as equal members of the care team and value what they bring to the team. But so often we ignore, um, the expertise of the parent.


[00:36:37] Daphna: Um, I feel this especially to be true in the outpatient setting. And I see it in the inpatient setting, even, you know, in our first few months in the NICU where a doc may be on Q24 every four or you may be on every, you know, few weeks. But the parent has been there potentially every single day and really does have [00:37:00] some expertise in their infant.


[00:37:02] Paige: Yeah, there was a great neurosurgeon that I worked with in Chicago, um, David Frim, and he said to me when I was a resident, um, if the parent says the shunt's malfunctioning, the shunt's malfunctioning.


[00:37:12] Daphna: Mm hmm.


[00:37:14] Paige: uh, and I was like, but there's no, you know, like, there's no signs. And he's like, what do you mean? And he's like, they know.


[00:37:19] Paige: And so yesterday, when I went in the other room and, you know, I was hearing all the voices, some of them saying, oh, she's just a histrionic, you know, parent. And I said, you know, there was this great doctor and he said, if the parent says something, I said, she's, she's got something, something's not right and we've got to see it through.


[00:37:33] Paige: And so I, you know, I did a talk at the American Academy of Cerebral Palsy and Developmental Medicine in the fall and, um, I was given free range, so it was kind of fun. And, uh, one of the things at the end, my takeaways were Um, we have to give grace, like when people come to us, especially in the outpatient setting, like they're not showing up because they don't think there's something, like they're showing up, unless you're telling them to show up, they're showing up because they truly [00:38:00] believe something isn't right.


[00:38:00] Paige: And we need to understand that. And it may not be that we can put our fingers on it and we can get a blood count for it or whatever it is, but something is not right. And we have a responsibility to listen and to, to try to help them find a way out of that. Um, and I think in the ICU, where I find it really interesting is, we're really good at the acute management, like we are, we're awesome.


[00:38:21] Paige: Um, we really, I think, collectively struggle with letting go, and letting parents step in and make decisions, and, um, you know, in Toronto we did this service where we, we would have this transition to home service, um, and, uh, one of the rounds we were on, this parent came out, and she'd been at the bedside every day, you know, Canada, you get, you know, paternal leave or parental leave for 18 months, for months, and she was very worried that her baby wasn't sleeping well because of all the additives and the GI distress and the grunting and groaning, and she wanted to just do exclusive breast milk, and, and we were like, yeah, but your baby's only 23 weeks, [00:39:00] it's not going to grow on exclusive breast milk, and, um, she said, but what's the impact of no sleep having on my baby's development and growth?


[00:39:07] Paige: And so we, I was like, listen, this is the point of this service. You get to choose. We'll do breast milk. And literally like the dietician, like, like almost collapsed on the floor. I mean, she was ready to murder me because the evidence wasn't with my decision. But I went out of the hall and I said to her, I said, if you don't think she's going to do that, as soon as she gets discharged and, and she's going to, and we're going to then not understand why the baby's not gaining weight.


[00:39:30] Paige: I'm like, let her have this period. We did it for, from a Thursday to a Monday. By Monday, the mom was like, Nope, it's not working. Baby's not growing. Let's look at how to do this. But we were able to do it, and we were able to honor her and let her make the choice.


[00:39:44] Ben: So it's interesting that we're talking about this. I mean, in that JAMA piece of paper, you do mention at some point how your medical record misses features that truly define you. And luckily for us, uh, you recently were part of an, of [00:40:00] a group of authors who published a paper in the, in the journal called children called understanding the family context, a qualitative descriptive study of print of parent and NICU clinician experiences and perspective.


[00:40:11] Ben: Um, and so. I think that the discussion we're having at this point is really about trying to go beyond the medical diagnoses and trying to understand the family context. And so can you tell us a little bit about what, what that is, what, what, what should, what is understanding of the family context in the NICU?


[00:40:30] Paige: I think for me, you know, as a, you know, cause this is all, you, you grow over time, right? I think for me, the first real lesson I had into understanding the family context, interestingly, despite the fact that my parents were ICU parents, It wasn't so much from them. I didn't really seem to absorb it that much.


[00:40:49] Paige: It was really watching my husband navigate the medical system when I was in it. Um, so in Chicago when I had surgery, and the surgery was actually quite complicated, and I was in the hospital for about six weeks. [00:41:00] Um, and then I had surgery again in Toronto and, or sorry, in Boston and then also in Toronto.


[00:41:06] Paige: Um, but seeing how traumatized my husband was from that six week period. So that the next time I went into the hospital, I remember laying in the PACU and waking up and, you know, you're sort of in and out of it and, uh, listening to these two nurses who were like totally griping about my husband, like what a jerk he was, what a pain in the butt he was, who did he think he was?


[00:41:28] Paige: And I would just, and then I was like, well, boy, I'm not waking up because, uh, this doesn't sound good. And it sounds like he's being kind of a jerk. And then, and I felt, you know, I was like more interested in having them not get mad than I was on really worrying about my husband, so I was like, I'm fine. Um, but after I kind of got out of that and I was able to think without the haze of like probably 15 drugs, I realized like, how sad is that?


[00:41:54] Paige: This is an incredibly intelligent man who is a, you know, uh, [00:42:00] runs a huge company and he was reduced to, Being demanding and frustrated because for him, he was scared. The last time his wife had gone into the operating room, I went into the ICU and I didn't come out and it was horrible. And they don't know, and to be fair to them, they don't know that history.


[00:42:20] Paige: But I did. And I understood afterwards why he was doing what he was doing and I love him. So when I see families and they're, you know, they get labeled in the ICU as difficult or demanding. I think about my, my, you know, my husband, who can be difficult and he can be demanding. Usually when I don't do something that I'm supposed to do and I should have done 15 times ago.


[00:42:43] Paige: But by and large, what drove him to behave like that was trauma and stress and fear and love. And when you come down to those things, like, it becomes so much easier to understand the behavior and to give someone some grace and say, forget it. This isn't where you thought you [00:43:00] were going to be. Let's talk about what we can do to help you.


[00:43:02] Paige: Um, I think, you know, it's, that's easy to say, it's not always easy to do, I might, you know, everybody's coming in with their own, on top of the families, we're all coming in with our own stuff. You know, your kid might be stressing out that they flunked their math test, they might be stressed out that they are applying to university, whatever it is, we're all carrying in our own stuff as well.


[00:43:23] Paige: And I think with COVID, everyone's stuff seems like it's gotten a little heavier, um, and I think we've got to figure out how we can get to a place of just being aware of it and And really, trying to balance supporting families and giving them some freedom to make some decisions, which I think are important, but also protecting ourselves.


[00:43:43] Paige: Because I think, you know, there's always, you know, there was one family I just about hung up my shingle with, you know, and, uh, and, you know, that's also too far. You know, like, trying to be understanding, trying to get to the place of understanding their context, and then just being like, this is actually just not going to work.


[00:43:59] Paige: [00:44:00] You know? You're hitting people. Like it just, it got to the point where I was like, no. Um, but finding that balance is not always easy. But I think we have a lot of work to do there.


[00:44:10] Ben: So what's interesting is that in this paper, you do talk about you and the rest of the authors, obviously you guys talk about like the process. And the impact


[00:44:18] Paige: Mm hmm.


[00:44:19] Ben: and how important the impact is and how flawed sometimes the process can be. You have this great figure. Um, I love a good figure. And, and in there you have like this sort of this, this Venn diagram that looks at the process and the impact.


[00:44:34] Ben: And. What's interesting about it is that it's almost symmetrical where you have the process and the impact from the perspective of the parent, but also from the perspective of the clinical team. And, and that includes everything. Some of the things that we've talked about already on the episode, talking about like, uh, how parents are complaining about the revolving clinician that like, Hey, I see one guy one day and then they're gone.


[00:44:56] Ben: And I have to see another guy another day asking me the same question. Um, [00:45:00] and, and I think that. What we are missing is I think we're focusing a lot on the impact about like trying to look at an outcome, but we're we're failing to see the issues in our in our process. Um, one of the things that are. That is mentioned.


[00:45:13] Ben: And so what's interesting is that the process and the impact, we have different bubbles for parents and clinicians, but the one that is pretty much identical is that both have this, um, this desire about like controlling the narrative. And that is actually present both parents and clinicians, and I think that's very interesting.


[00:45:33] Ben: And so can you tell us a little bit about what, what that means? First of all, controlling the narrative in that scenario and, and, and what are your, your tidbits on how to, uh, to achieve that.


[00:45:44] Paige: Yeah, I mean, so I think, I mean, this was Maya DeHaan's work. And, um, and it was probably from, you know, her brilliance as also, of course. And then, you know, hours of us just going back and forth talking about this. And saying, like, well, why did, how did we get there with this family? What happened? Um, [00:46:00] and in my mind, the simplest way I think of it is, you know, in the ICU, and, and it's probably like this elsewhere, but really in this incredible, um, I think it was John Lantos who called the ICU the emotional cauldron.


[00:46:11] Paige: And um, in this place where there's so much going on, reputations are earned, but they are shared. And often what gets you your reputation might be one contextual event, and then it's shared without any provision of that context. And so that's where that controlling the narrative idea comes in is that, um, to some degree, if, if I'm the person who feels that that reputation has been earned and it's, this is the only way you can be, then that's the narrative I want to share and I want people to respect that that's my, that's, that's my narrative.


[00:46:44] Paige: But it's only in that one context. And that's where it gets tricky, because, you know, so for an example, So, um, a parent that is challenging, um, and you have a challenging interaction, it's, it's sort of, um, validating when you share it with your colleagues and then they see it too. [00:47:00] But that's not necessarily this, the narrative that, you know, it might've been a bad day.


[00:47:05] Paige: They might've found out that something else happened, like who knows? And so trying to control it and, and have that narrative be more, uh, I think value based and less about our impressions, I think is really important and I think. What Maya has been working on with that family snapshot is a really cool opportunity to just say this is what the families want you to understand.


[00:47:27] Paige: This is who they are. This is what's important to them. If you see them on a bad moment, that's a, you know, that's, that's whatever, but this is who they are. Um, instead of it being what we've done historically, which is, you know, Oh, well that family, let me tell you about them and that family, you know, and that's how it's all gone.


[00:47:44] Paige: It's been like word of mouth and it's And, you know, it's probably from working with parent, parents in the ICU and hearing from them how, uh, how they perceived how we did things. And then also sort of how accurate some of their perceptions were [00:48:00] and how aware they were that they were being talked about and, um, and examined.


[00:48:04] Paige: And I was like, this isn't, this isn't good care. Like, you know, and I always come back to Eric, my husband, I'm like, you know, if that was the narrative, his narrative would be that he was a total jerk. He's not. He's lovely, and he's great, and he's, but he's, he was afraid. And so if the narrative can be, this is who I am.


[00:48:25] Paige: This is how I like information. This is what, what scares me. This is what's important to me. He would have been a lot more human, and he would have been a lot more easily understood.


[00:48:35] Daphna: What do you think needs to change, like, I think even from the beginning of medical education, um, about how we interact with patients in families and Putting the humanism kind of back in medicine and, and seeing them as people who are, like you said, they're, I mean, they're traumatized and they're [00:49:00] scared and they want what's best for their loved one.


[00:49:04] Daphna: Um, you know, I think medical schools are trying to, to, to teach that, but it seems like we're missing the mark somehow.


[00:49:12] Paige: Yeah, yeah, I will say I think the education needs to be twofold, and how do you educate people about the health care system? They're not gonna want the education until they, even if they need it, they don't necessarily want it. You know, so


[00:49:24] Paige: And this is what I haven't figured out. How do you educate people to be better patients?


[00:49:28] Paige: How do you educate people not to show up expecting 15 things to get done in an hour? You know? Like, um, I had a great colleague who told me three things. And so every time I go to the doctor, I have three things that that's all, the only things I expect to get done in that visit.


[00:49:43] Paige: But how do you educate families to do that?


[00:49:45] Paige: And so I think what I've done, and I'm not so sure it's the right way to do it, is I think certainly medical schools are doing a great job with trying to teach humanism. I think it's really important to bring patients in or families in and share their stories in medical school so there's a more [00:50:00] narrative component.


[00:50:01] Paige: Parents and families understand or are able to share their stories and teach young trainees about how to be more aware. Um, I think the other side of it though is as practitioners, it benefits us to constantly go back and teach the families how to navigate it. Like we, we know the system. We live in it.


[00:50:19] Paige: We know the rules. Um, and so my colleague, Dr. Benahani in Toronto, um, she is originally from Jordan and she has this great saying when she goes in and meets a family that's just arriving in the ICU for her first like five day visit. She's like, okay, you were a house guest. Now you live here. Let me tell you how it works.


[00:50:37] Paige: Like, and she makes the analogy that like, I'm going to tell you how to load the dishwasher, what you know, this is how the house works. And so I think that's important. And I think that needs to be happening at multiple time points and probably daily. But, this is how things work, this is how we get things done, this is what we're paying attention to.


[00:50:53] Paige: And boiling it down to, you know, not the granularity of what the potassium is, but, you know, when I do [00:51:00] counseling for families, when I'm seeing them in the, in the antenatal part, part of the hospital, I'll say, you're going to hear so much stuff on rounds, what I want you to focus on for the next couple of days is, is my baby doing what they should be for this gestation?


[00:51:13] Ben: Right.


[00:51:13] Paige: If the answer is yes. The rest will come, just focus on yes. If the answer is no, why? And so, that's the beginnings of teaching them the system, because at the end of the day on rounds, if a 23 eaker is acting like a 23 eaker, I'm like, okay. You know? We all are sort of like, yep, 23 eaker, nobody's up in arms, but when you're in there and you see the granularity of it, it can be scary.


[00:51:33] Paige: So to be able to shed that, this is what they do. And we're definitely still in this phase of we don't know, but today, they're doing exactly what we expect. And we can deal with that. It's when they don't do what we expect that we get behind. Um, I think that's important. I think it's important to explain to them, This is how rounds work.


[00:51:50] Paige: This is what we do. This is what we're going to talk about. And at the end of it, you know, this is what we're really saying and this is what we really think. And teaching them to [00:52:00] be participants in the system and to be good participants in the system. You know, like, you can't come here and expect the system to change because you don't like it.


[00:52:09] Paige: There's, you know, a hundred people that are trying to do something, and we need to have everybody working together. And there's a reason that we do it this way. Safety, quality, whatever it is, there's usually evidence. So, trying to also just educate them that this is the way it works, I think is important.


[00:52:24] Paige: Because I think it's less scary if people understand things. So, I think providing more humanistic education, but I think also providing more education to families is also a good approach.


[00:52:36] Daphna: I love, it's really collaborating with them, but giving them the right tools and the anticipatory guidance that we know, we know what's going to, we, we can foresee certain things happening um, in that expectation setting. I love that. Um, I know we're getting close to the end of, uh, our hour and I wanted to go back to something that, um, you had said kind of so [00:53:00] eloquently early about the importance of like being your authentic self.


[00:53:03] Daphna: Um, and I think this has been important in, in your career around, um, your medical history. But I think that's a struggle we all find sometimes with a career in medicine or health care, um, you know, about personal disclosures or being open with the people we work with or being open about the things of the job we like or don't like, um, and setting ourselves up for success.


[00:53:30] Daphna: Um, how can we all strive to be our authentic selves and support our colleagues in being their authentic selves?


[00:53:39] Paige: Uh, wow. Um, that's a tricky question. A good one. I think, I mean, I think first and foremost, by being authentic, as much as just coming out and saying that this was something I had, it's not, it's not everything. You know? Um, everything is my family, my husband, my, you know, my daughter. [00:54:00] Um, so this is a part of it, but um, it's, what I try to be very aware of is it's not, it's not an excuse.


[00:54:07] Paige: And it's not, uh, I can't because it's, I'm really going to do this, this, and this. And this is going to be a little tricky, and I'm going to work around it this way. So, um, I've been very careful of, well, it's out, and it's out in the open. Um, there's certain things I just can't do, and I've been very honest about that.


[00:54:26] Paige: But everything else I'm willing to, you know, try to do in any way I can. Because I also realize other people are dealing with stuff. And, um, and their stuff may not be as, as easy to talk about. And I, although I don't really know, I still wonder how, how I ever wrote that JAMA editorial, because that stuff isn't very easy to talk about.


[00:54:44] Paige: But all I can do is just try to be a good teammate and a good partner, and then be open to people. And I also have tried very carefully to be more aware of what I say, and not, you know, I used to be quite judgmental, very judgmental, um, judgmental page moments, I had them [00:55:00] named. Um, if a colleague wasn't doing what I thought they should be doing, or, you know, whatever it was.


[00:55:04] Paige: And I've just tried to step back and say, like, I don't necessarily know, like, they don't know what I've got. Like, why would I know what they've got? So, I've tried to be a little bit more forgiving and, and just say, like, give grace. Like, I don't know. And if, if something's going on, you know, how can I help?


[00:55:20] Paige: And, and not presuming that it's, it's all sort of one sided and, and unilateral. Um, but that's hard. And if you have a bad day, it's really not easy.


[00:55:31] Paige: So,


[00:55:31] Ben: My last question for you pages is really for, for young physicians who are listening to the, to the podcast and, and Trying to understand a little bit. What has your relationship with uncertainty been like? We talk a lot about uncertainty in the NICU and, and how do you, how do you continuously move forward and upward despite uncertainty and how, um, what is your advice for people who are in a similar position [00:56:00] at an earlier stage of their career and who are terrified about what the future holds


[00:56:04] Paige: yeah, uh, that's become more and more of a question that I've been asked and I do, I don't know if I have a perfect answer for those younger physicians because I worry about them and I, and I worry, I was in a position of being more senior, having had a built a reputation in a career that already existed that didn't have that, that, um, story out in front and center.


[00:56:25] Paige: Um, there are two quotes. I watched a great documentary from Michael J. Fox, uh, recently. And one of them, the one that I think, for me, how do I deal with the uncertainty? And I loved this one. With gratitude, optimism is sustainable. And so, and this has been a practice I've done since I was a little girl, and I think it was from school when a teacher told me, you can't ask for things if you're not thankful, if you don't think about what you already got.


[00:56:48] Paige: And so every night when I go to bed, I think, I go through all the things that I'm thankful for. And then it does sort of charge my battery to be like, wow, okay. You know, the other night I drove 10 hours in a driving rainstorm to get back [00:57:00] for clinic on Monday. And I got home at 1 in the morning and I was in clinic at 6 in the morning or 7 in the morning on the road at 6.


[00:57:07] Paige: And like some people would be like, that sucked. It was horrible. And it did. It was awful. But there were so many moments of gratitude, you know. I had a great partner who was so grateful I was there. We went out to dinner together last night. We had a nice chat. Like. And that's what was the reason for it.


[00:57:21] Paige: So with gratitude, you can be optimistic and I think that's really important. And then in terms of how to handle the younger physicians, this is another quote from Michael J. Fox. So not my brilliance. I highly recommend this documentary. You are only as sick as your secrets. And uh, for me that, that was true.


[00:57:39] Paige: I, I honestly, I think from a mental health standpoint, I was on the verge of like clinically diagnosed. Because I just was so depressed and anxious about everything. And all of a sudden I realized that the driver of it was how closeted and inauthentic I had been living. And how anxious it was making me [00:58:00] because I was seeing my child now complicit in this


[00:58:02] Paige: chaos. And it just didn't feel like everything about me is about being honest and having, you know, being straightforward. And here I was having this completely second life that I wasn't really being honest about. Um, so I love that, you're only as sick as your secrets. So if there's a way for these young physicians to find support, um, find paths that let them not have secrets, I think that's really important.


[00:58:25] Paige: And I think medicine has to make an environment where we're not tolerant, because that's not the right word, where we embrace these differences because they are the people we take care of. And if they are the people we take care of, aren't we going to be better providers if we actually have amongst ourselves, those people to inform us and shape our practice.


[00:58:45] Ben: a hundred percent? I'm not going to. I'm gonna leave it at that. This is great


[00:58:49] Daphna: hmm. I love that.


[00:58:50] Paige: Yeah.


[00:58:51] Ben: Dr. Page Church, thank you so much for making the time to be with us


[00:58:54] Paige: fun.


[00:58:55] Ben: It was an enlightening Experience for me and and I really appreciate your candor and we [00:59:00] will link Um the different papers that we referenced in the episode show notes And we will leave contact information for you on the episode page.


[00:59:07] Ben: So if anybody is interested in reaching out Asking for advice or anything like that. They'll be able to get in touch with you. You are active on twitter as well So we will link your twitter account there And yes, thank you so much for making the time to be with us today.


[00:59:22] Paige: Thank you.


[00:59:23] Daphna: I just, and I just wanted to thank you really for, for being brave. You know, I think sometimes that your quote about, um, secrets, I think it's courageous to, to open up about ourselves and share, you know, ourselves with our patients and other colleagues. And, um, maybe, maybe we will all be a little bit more free to, to be as brave as you are after hearing, uh, your, um, talk today.


[00:59:50] Daphna: Thank you


[00:59:50] Paige: you. Thank you. Thank you. Thank you. It was such an honor.


[00:59:54] Ben: Thank you.



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