Ep. 67: What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD




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Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care.

In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shares the pain and grief they feel when things take a turn for the worse for our children, and the triumph they experience when the opposite occurs. He also gives us much-needed reassurances in our role as our children’s caregivers.

Dr. Dominic Moore, MD
Dr. Dominic Moore, MD
Episode Transcript

Dr. Dominic Moore  0:00 

I work with medical students and residents and fellows. And a common question that I get is, is it okay if a family sees me crying? And I think that question just says volumes about medicine. We are crying.


Madeline Cheney  0:19 

Hey, you're listening to the rare life. I'm your host, Madeline Cheney. And today I have for you, Episode 67, with Dr. Dominic Moore, for what your child's doctors want you to know. But don't tell you. I really loved our conversation. It's really focused on the doctor parent child relationship, and what it's like for them on their side to care very deeply about our child and our well being. As you're listening, you may be thinking, but Maddie doctors, so and so certainly does not feel this way or think this way. And yes, I think it'd be super naive and untrue to say that every doctor everywhere cares about our families in this way. But I do think that it includes more doctors than we realize. There are a few things in here I think are really important for us to hear. And I'm super glad you're here for it. Before I introduce our good doctor, I have a new question of the month. It is you know you're a medical mom or dad, when dot dot that one more time, you know you're a medical mom or dad when fill in the blank for me, you can do that on the website where you can also look through the responses from last month. Or you can wait until I asked for responses on my Instagram stories. If you don't follow me yet, you can at the underscore rare underscore life. Okay, so let me tell you a bit about our guest today. Dr. Dominic Moore is the division chief for palliative care at our big university hospital, the University of Utah and at primary Children's Hospital. Kimball was born at said University Hospital and then has been irregular at primaries. Although I will say I hadn't met Dominic until this recording together. He has been officially practicing for nine years. He lives here in Utah, with his wife and four kiddos ranging ages three to 14 years old. Also, fun fact, he happens to be a vocalist and guitarist for the Christian group called the lower lights, which my friends is pretty crazy. I found this out while we were chatting before the recording. And I was kind of freaking out because Justin and I have been a longtime fan listening pretty frequently and consistently over our eight years of married life. And we still do pretty often so I was geeking out just a little bit to find out he's in that group. So crazy. So for my fellow Christian peeps, go check them out the lower lights. Alright, Dominic is a lover of being outside, and you guessed it, making music. Let's jump in. Hi, Dominic, welcome to the show.


Dr. Dominic Moore  3:30 

Oh, thanks so much for having me.


Madeline Cheney  3:32 

Yeah I really appreciate you taking the time out of your evening to share with us your perspective as a doctor because many of us kind of live at the hospital and you know, outpatient services and with all these specialists helping us take care of our children. So I think this is going to be a really relevant conversation for so many parents listening, I really appreciate you. Oh, my pleasure. So I would love to first hear from you. Just a little bit of backstory of what inspired you to even go into medicine and to become a doctor. When did that first enter your mind that thought of being a doctor?


Dr. Dominic Moore  4:12 

You know, I don't know when I did first enter my mind. I'm, I'm the first person to go into medicine and my family and have really awesome and supportive family. But medicine really was not in my mind. But it was all around me. And serious illness also was kind of all around me and starting at a pretty young age when I was about in sixth grade. I had either a family member or a friend or someone pass away really every year until I was out of high school. And that was a really powerful tool in making me grow up about a few things pretty fast. And one of those things was what It means to live and die, and also what it means to be taken care of. And I remember maybe the first time that I really thought I need to do this, I was going up to visit my grandfather, he was up at the hospital with cancer. And he was in terrible pain, and kind of couldn't interact with me because he was in terrible pain. And I left and I thought, there's got to be a better way than this, there's got to be a better way that we can treat these people who were so important as individuals, in this time of their life that is so important. And I think that lit a fire in me to try to put my actions and my work into the world, to help other people, because it just, it really felt like we could do better. And from there, it kind of stretched backward, not only from people at the very end of their life, which is such a sacred time, but helping people who are facing things that are serious, and potentially life threatening. And helping them think through those truly important moments. And I guess, to use the same word, again, like those kind of sacred moments, and to be there with them. And so that's how I went into medicine. And with a lot of support from a lot of people.


Madeline Cheney  6:35 

I love that is so meaningful. And I think, especially, you know, thinking about someone that you had a relationship with and cared about so much, and realizing that you could do more to help them be more comfortable and gaining that compassion, I guess, for patients and their struggles and pain and things that they go through. I love that. So I would love to dig into kind of our what doctors want you to know, but don't tell you, I think this is an interesting topic. Because, you know, we see these specialists and doctors pretty briefly, like often but the you know, the time that we actually spend together is pretty short. And I think a lot of these things that doctors think or feel, you know, there's not always the best setting to say them. So I think this is really cool. I would love to start out by hearing how you feel, and many doctors around you feel about the families that you serve both the children and the parents.


Dr. Dominic Moore  7:38 

You know, there's this funny phrase, it goes without saying. And I think sometimes in medicine, we assume that certain things go without saying and the way that we feel about our patients and their families is maybe one of those things that to our detriment or in error, we we don't say enough. And one of those things as I care so much about you and your family. And I think about your family, not just on the days that you come to my clinic, or that I see you in the hospital. But I go home, and I worry about you. And I think about your family or I think about what's happening to you, when I'm mowing my lawn when I'm doing these different things. And I think there are a lot of reasons for that is that if you don't express it in the right way, it kind of sounds creepy, but so I think that, as doctors, we could say more often that we care and let people know that and realize that maybe it doesn't go without saying that we do need to say it and just say how much we've been worried about people or how much we've been thinking about people. Because at least in my experience, that's important to know that somebody cares about you.


Madeline Cheney  8:55 

Hmm, yeah. And I think that, like you say, you have to be careful, like how you express things and stuff, but I do think it probably would help kind of that, you know, Doctor parent relationship where you're kind of navigating these different issues, maybe, you know, troubleshooting and trying to find the best solution. And that would be interesting for that caring to be more manifest so that parents maybe trust medical professionals more. That's a really interesting concept.


Dr. Dominic Moore  9:24 

Well, and and I think there are a couple of things that maybe also get in the way of that within medicine, we think about, we call it professionalism. And I think there are two aspects of professionalism that are misunderstood a little bit by us in medicine and one is we we commit to being truth tellers. We commit to being very frank and honest and making sure that people understand what's going on with them and The other thing is that we commit to, as best as we can, having some objectivity in what we do. And I think that both of those principles can be very well respected. And we can let people know that we care about them. One example that I sometimes use when I work with medical students is, you can be a truth teller without being a jerk. And I like that. And the non medical example that I use is, let's say that you have a friend, you see a party who says, Hey, I bought a lottery ticket or something, you know, maybe something that you do or don't support or whatever else, but they're your friend. And so, because you're a normal, nice person, you say, oh, my goodness, what would you buy? If you won the lottery, you know, and they're like, Oh, I do this, and I pay off this, and I help this person, and you're like, Oh, great. And then like, between the two of you, you both know that chances of the lottery are not amazing, right? And if you are the truth teller, without the compassion, when you are at the party, and your friend says, Hey, I, I bought two lottery tickets on my way home last night, you like cut them off in the middle of their sentence and say, you're never gonna win the lottery. And, and that is not like a normal way that people act because it's rude, right. And it also doesn't communicate to your friend that even if you don't think that it's high reliability or high likelihood that that is going to happen for them. If it did happen to them, you would be elated, you would be over the moon. And occasionally, especially with difficult medical situations, doctors feel like they need to be the truth teller in the situation. And a family says, we're really hoping for this thing, which the doctor may feel has a low likelihood. And instead of saying, I would love for that to happen, that sounds amazing. And I'm also I'm really worried, because these other things are happening. Are we seeing the same thing we just jumped straight into, I don't think that's going to happen, or even worse, will say that's not going to happen. Because I think as maybe you and some of your listeners have experienced, there is no better way to have a child accomplish something, and to have a doctor say that they can't. Right. Yeah. And, and over the years of doing this, that's a very humbling thing. And in addition to letting people know that you care about them, and that you're hoping that things go well for them. I think just being able to say, Boy, I wish that would happen to because To tell you the truth, Madeline like every day, I walked into the hospital, hoping that something amazing has happened. That fixes things for kids, and that we don't need children's hospitals anymore. That would be amazing, right? It is my greatest hope. Yeah. And we still live in this world. And so that's the place that I think our team tries to meet families is to say, Hey, we know the odds that are against you. And we are cheering for you 100%. And we hope that this thing that we're all worried about happening doesn't happen. If it does, we've got your back. But man, if it doesn't happen, and things go great, we are going to be here celebrating right along with you.


Madeline Cheney  13:59 

I love that so much. And I think the difference of those responses or the you know that reaction in saying either "Oh, it's not gonna happen", because statistically, the chances are so low versus "Yeah, I hope that they get better, too". I think that I hope they get better too, or Yeah, I'm rooting for them. And I'm on your team that's just so unifying, because instead of feeling like the doctor is almost like, lumped together with, you know, whatever the child is struggling with, it's like, no, they're on our team. They're on our side. And we know we're battling this together. And you know, I will say to that for our family, we've had very positive experiences with the professionals that we have interacted with. I don't think 100% we felt that but most of the, the doctors have had that energy that does make a huge difference. Like it really does. I think it's so just empowering as a parent when we're trying to figure out what the heck to do to have, you know, the medical professionals on your side. To feel unified, so I really love that. So when things do go poorly, and not even when, you know, a child passes away, but just hard things are happening medically. How, how does that affect you? Do you ever feel like you're grieving for that family? Does that affect you emotionally?


Dr. Dominic Moore  15:20 

For sure? It absolutely does. And, you know, it's an interesting thing in medicine, only recently have we really think been honest with ourselves about the fact that, that we do grieve this, because for a long time, there was a culture in medicine, that was kind of I don't know if grief denying is the right word. But basically, there were different messages that people were given in medicine, that said, You can't grieve. And one of those messages was, you've got to get yourself together. Otherwise, you're never going to survive in a life in medicine. So what you need to do is you need to shut that portion of you off, and not have it work anymore, even though that's maybe one of the major drivers that brought you into medicine. And you just need to shut that part of yourself down. And that was unsuccessful, at best and poisonous at worst, I think for people. And the other thing that is said, within groups, or previously had been said to people who were in training was, you don't have a right to this grief. This isn't your child. It's not your life that you're going home to. And so you don't deserve this grief. And by having this feeling, that would be like an insult to the family. Which is bananas, based on based on what families tell us. You know, they say, I was so touched, when Dr. So and So sat with us and cried. Yeah, and, you know, I really knew that my child's life meant something to somebody. Yeah. And I work with medical students and residents and fellows. And a common question that I get is, is it okay, if a family sees me crying? And I think that question just says volumes about, about medicine, you know, like, a, we are crying. And I'll say, for me personally, it doesn't usually hit me in this situation, because I'm trying so hard to be a resource for the family. But I'll come home and cry. And for other people, it's in the moment, and it's hard to not cry in that moment. And the rule of thumb that we usually give providers, because there are limits and kind of reasonable approaches, we say, if you're crying, while you are comforting someone, then that's probably fine. And in fact, probably shows how much you cared about their loved one. If you're crying so hard, that the family needs to start comforting you, then maybe, maybe that's the time to kind of respectfully, excuse yourself, or transfer kind of responsibilities to somebody else, while you work through that emotion and feel that emotion so that you can be there 100% for the family and their child.


Madeline Cheney  18:46 

Hmm. Yeah, that makes so much sense. And really, I think it goes back to even the first few, you know, things we talked about where you do care about the families and the kids. And so, you know, you grieve people that you've come to love and so, you know, when these children are taking a turn for the worse or things aren't looking good, or they pass away, like of course that you know, that causes this grief because, you know, you cared about them in the first place. You know, I thinking back to about different parents who have I know shared different stories about like, we didn't know she would make it. They told me to say goodbye. And then she would say and all the nurses were sitting there crying to I said my last goodbye, like that made the story because it was meaningful, I think to her. And, you know, I think in a way it was comforting to have someone to grieve with you. And again, I think adds to that, you know, kind of unity as a team.


Dr. Dominic Moore  19:41 

Yeah, something that you mentioned, when we were chatting about your podcast in general is just the value of community for parents and kids working through rare diseases, right? And that can feel really isolating and I think anything that we can do to combat that isolation, whether it sharing tears or talking through things, or letting people know how important they are, I think that's therapeutic for everybody involved.


Madeline Cheney  20:18 

Yeah, and even like, times with my son, where we'd be at a follow up appointment, and outpatient, so it's not like as intense or sad, and, but it's stressful. And, you know, we're trying to figure out why he's not gaining weight, or whatever. And just the doctors that would like be playful with him. And you know, take the time to be like, Hey, little buddy. Oh, he's so cute. Like, just things like that. It's like, oh, he cares about him. Like he cares about Kimble. And so even in like that lightheartedness. And I don't know, just kind of joking around and paying attention and saying hi to the child, I think that also goes a long way. Right? It's like, on the other side of the spectrum, it's not, you know, crying with you, while you just found out your child died. So it's a lot lighter than that, but it's still I, you know, I noticed that, like, I was like, yeah, this doctor cares about him. I'm sure that every doctor cares. But we also have had experiences and they're usually older doctors, I don't know if they were trained in, you know, the more traditional way, but they don't really seem to even like acknowledge his presence in the room other than just checking him. And you know, that is just a huge contrast, like, I think it just goes to show how powerful even just, you know, that playful relationship with your child, or acknowledgement how far that goes.


Dr. Dominic Moore  21:34 

I think most people who can do this job, or nursing or anything else, in healthcare for a long period of time, you need to be able to find joy, with families and with kids. And I'll say, For my part, I love working in a children's hospital. I mean, just going from the lobby up to my office, I tend to encounter like, two to three goofy kids who are like doing silly things, or who have like, a cute shirt on or whatever else are who are trying to show me the picture that they colored while we're in the elevator. It's, it's awesome. And it really, again, to that idea of feeding your soul, like, you know, if you miss a chance to be happy around the kid, like, you're really missing out, it's really a shame.


Madeline Cheney  22:28 

Right? Right. And that does seem to, you know, kind of balance out the really hard, you know, darker times as a professional is having the lighter times too. And like you say, enjoying kids, because kids are awesome. Kids are so resilient.


Dr. Dominic Moore  22:45 

Yeah, they rule. Yeah. And what's interesting to me, and seemed unusual initially when I started this work, but now just feels like a matter of course, is how much joy there is, even when things are going bad for a family. So one of the things that I tried to ask when I'm getting to know, a child and their family is, I'll come in and just say, so if I was feeding you, I'd say I'm eating come home for the first time. What are your favorite things about Kimball? What are the things that make Kimble cool? And everybody has an answer to that question, because they're obsessed with their kids, and they love them, and they think they're amazing, and they are amazing. And it's so fun to see them through their parents eyes.


Madeline Cheney  23:36 

I love that. I think there is like that aspect. even talking about the medical stuff, but being like, you know, they're like, okay, you know, how much is he taking by mouth now? And like, Okay, well, let me tell you all about him. Because like you say, like, every parent's favorite thing to talk about is their children. And so you know, I think it's a great question to ask her. And so do you first meet them? So I have a question. I want you to feel like you can be super honest. And but I would love to know what drives you bonkers that parents do or say like, what what are your like, just just stop, never do XYZ or say XYZ?


Dr. Dominic Moore  24:14 

Oh, that's a that's a good question. I'll say, I don't really get driven bonkers by parents. I think something that maybe I wish that I could give parents. Two things that I wish I could give parents and I think it would be immensely helpful. I would say one is confidence and the other is self compassion. Confidence. I will say we occasionally as a team, work with parents who by no fault of their own, don't feel confident about the things that they're doing. I think of some of our parents whose children have a tracheostomy. And when they think about having a tracheostomy placed or a G tube placed or some other thing, they just think about it and say, Whoa, no, I can never do that. That's, that's beyond me. And I look at them knowing full well, that they can do an amazing job at it, and that it'll be great. And I can see why someone would doubt me because I often have not known many of these parents for their whole lives or even for that long. And they look at some of these tasks are some of these things that are going to be part of their child's course and illness? And they just think, no way, that's never going to be me. And I wish I could give them the confidence or even like, if I really had my wish, I wish I could bring a time machine to them, and be like, look at you in five years. Can you believe how much you've learned in these five years? Like, watch yourself doing these cares? Can you believe that? This is you? This is the same you who's worried right now, in this conference, hearing people talk about a tracheotomy or something else like this issue. You're the same person, but you've just had time. And so I wish that I could give parents confidence.


Madeline Cheney  26:26 

Oh, I really like that. And I think we all need that time machine cuz I often think that even just about other things, too. But like, if only I could have seen myself now. You know, when I first received Kimball's diagnosis, or like whatever just to be like, oh, life is actually great. And you know, you do adjust. So I think that would be really helpful for so many people. I really like that.


Dr. Dominic Moore  26:51 

Well, and again, the time machine would be really useful, because it's not some dude, who you have not known for very long. And who does not necessarily have a child with the same diagnosis as you who's trying to convince you of this thing. It's you, yourself, seeing you yourself, do it. And because I've done this for long enough, I can absolutely like the time machine that's in my mind's eye is is perfect. And often, because I've been doing it for a while people will come back a year or two years or three years later. And I'll be like, you're doing amazing. And I knew you would do this.


Madeline Cheney  27:31 

Yeah, I think that's really cool. Because I do think there's this tendency to be like, Well, I know, like, most parents can do this, but I can't like I'm not as capable as they are. I'm just a regular old person with, you know, a lot of times zero medical background. But you know, I think most people feel that way. And yet here we are, like, we figure it out. You just have to.


Dr. Dominic Moore  27:54 

Yeah, yeah, absolutely. And I think, you know, we all have kind of this dueling perception of ourselves of both our sameness with everybody else, and also our uniqueness. And I think when you hear that other parents who are like you are able to do these things, some people tend to really focus on their uniqueness. Well, no, but they're not like me, like, I'm not great doing math in my head, or I'm not great with this thing or that thing. I don't think I'll be able to do feeds. And so we kind of tend to talk down to ourselves or assume that we're the exception and how we're going to bungle it. Other people have done it, okay, but I'm going to bungle it. And we can't necessarily see ourselves as part of this whole body of caregivers and parents of children with unique medical needs. I would love to have a cure for that.


Madeline Cheney  28:55 

Yeah, yeah, I think you're right. When you feel that community, everything suddenly seems so much more doable. And I recognize that even just, you know, with having this podcast, and even just being on social media, like I wasn't really interacting with other parents before. And just to be like, Oh, yeah, like, you know, Kimbo has a sleep study, be thinking of us and then to have all these people messaging like, Oh, you know, sleep studies are the worst Good luck and you know, you'll never sleep and whatever. I walked into that hospital feeling so good, just so confidence, I was like, Oh, these parents did it. They struggle didn't even do that. Well. that'll probably be me. That's okay. They did too. So even like, puts the, I guess, the expectation of the bar really low. But just that sense of community. I really do think that is so important.


Dr. Dominic Moore  29:44 

Yeah, but, and that's a great example, the sleep study because, I mean, not very many people have ever had a sleep study or seen what it looks like or anything else and you're just thinking, Man, I don't know what the heck this is going to be.


Madeline Cheney  29:56 

Yeah, yeah. And even like I had a parent like telling me what type Have shampoo to use to get the glue out of his hair. So like, you know, even that kind of stuff was just so helpful.


Dr. Dominic Moore  30:05 

And I think another thing that you see when you've been a parent of a child with special healthcare needs is that there are different types of expertise, right? Like, you may not be the person who does the interpretation of the sleep study. But you're going to be the one that's like getting the glue out of their hair and doing that sort of thing. I mean, there's a lot of practical skill and need in that. I have a bunch of ideas of things I wish I could do. And one of the things that I wish I could do is a YouTube series. If any of your listeners want to do this, I think they should do it. where parents whose kids have special healthcare needs and who need kind of special medical strollers like, show how they customize their strollers, because they're like, all these people who are doing it and doing amazing work at it. And I wish that there was just a way for parents to show each other this stuff to be like, hey, if you use this clip, it's perfect for this. And if you do a double stroller instead of a single stroller, you can store supplies here. And it's like, all these life hacks. And oh, yeah, they're amazing. I mean, nobody is resourceful. Like a parent whose child has special health care needs, like nobody's resourceful in that same way I want with you, during the zombie apocalypse, they will be able to make a car out of duct tape.


Madeline Cheney  31:34 

Oh, yeah, no, I love that I think we have to figure out how to get that YouTube channel going on. Because I do think that's so great into utilize other parents, you know, solutions to practical things like the stroller, I think that's a really great example. Because that affects, you know, your everyday life like going all over the place. And so to make your comings and goings a little bit more convenient, that's such a good example of like, how we can band together. And even in that really practical way, I really like that. So you mentioned things that you wish you could give a parent. And one of them you said was the time machine and the confidence but the other you said was self compassion? So do you mind sharing a little bit more about that?


Dr. Dominic Moore  32:18 

Oh, for sure. Yeah. And that's something that man I could blabber on for a long time about, but I think some parents and not all parents, but some parents have a real tendency to blame themselves for things that are not their fault. And could never be their fault. And even though they don't have control over certain things in their life, that if they were just a better mom, or just a better dad, they might be able to have control over that thing. Which is, in my mind, at least a form of self torture. Because, you know, there are just simply things in this world in this life, that we don't control over our kids. And, you know, we all wish that we could fix everything, and we can't. And when we approached life, saying that every bad thing that happens is my fault. And that I should have control over everything around me, man, that just sets you up to feel like you are failing over and over and over again.


Madeline Cheney  33:29 

Yeah and I also picture like, maybe we find out some bad news or receive another diagnosis or whatever. I think if you are in that mindset of like, Oh, I caused this, which I think our brains kind of do that automatically, at least to some degree of like, Okay, what should I have done, I am their parent, I need to protect them. But I think that that would honestly make us not as present and capable of, you know, being there for children in the way they need, like, they need our love. Like, we really can't control that stuff. And you know, even if there was like a little mistake you made that like, I don't lead to more vomiting or like whatever, that child needs the parent to be there and for us to be in a place that's not feeling that self blame and that guilt. I know, it's easier said than done. But I think maybe even thinking of it that way. And like recognizing like, no, my child doesn't need my guilt. They need my love.


Dr. Dominic Moore  34:23 

Yeah. And they need me to be whole, right? Like, I'm going to do a better job of caring for my child if I am whole. So when I was a pediatric resident, one of the things that you do is work in the hospital and doing admissions of kids who are coming into the hospital and they've been through the ER, and then they come up to the general floor and you kind of get them settled in. And in my final year of residency, I had thought a lot about how much parents beat themselves up and so on. Whenever it was true, which almost always was true, I'd finished getting their kids kind of tucked in and settled into bed and get their medications ordered and everything else. And one of the last things that I'd say to the parents after I made sure they didn't have any more questions is, I'd say, Hey, I just want you to know, this might seem like a silly thing for me to say, but I want you to know that you did not cause your child to come into the hospital tonight. It wasn't your fault. And in fact, you did the exact right thing to bring them to the place that they needed to be. And from the very first time I did that, I had parents say, Oh, thanks for letting me know, I was so worried that this was because I stopped breastfeeding six months ago, or, you know, I was worried that this was because I, you know, let them look out the window today, or just whatever thing we do as parents to, to feel like, maybe there's an explanation to this thing that happened that we wish didn't happen. And I've since then taught the residents that I work with to do this. And they always look at me like, now that goes without saying, like, of course this person knows that they didn't give their kid, you know, type one diabetes, or whatever else. And I'm always like, No, just let parents know this, you're not going to regret it. And then the residents that give me feedback about it, so I'm a little biased, because maybe there are some that never do it or do it and it doesn't work, but always come back and say, You know what, I had a really good conversation with this family, because they had been beating themselves up that, you know, that their child had RSV, or was newly diagnosed with asthma or whatever else.


Madeline Cheney  36:54  

Oh, yeah, yeah, I think that's really powerful. When Kimble was very young, he was still under a year old, he kept on getting admitted for colds because his airway issues. And whenever we went in there, it was felt like I was kind of copping out. Like, we'd be at home trying to gauge like, okay, is he keeping his airway open? Like, can we just stay home a little bit longer? And then finally, I just know, I'm like, no, it's time to go in. I almost felt like, you know, we're coming back to where he got discharged from the Nikki and be like, Oh, we actually can't handle this by ourselves. We need your help, almost like we were in trouble or something. Like be ashamed, you know, parents coming back. And I know that that's like, it's not super logical, because it's likely that they kept him alive those times. But I don't know. I feel like there's still kind of this like shameful feeling, at least for us to like, kind of come in. They're like, Yeah, can you help us keep our child alive? Because like, we can't do it ourselves. And, yeah, that's not a great feeling.


Dr. Dominic Moore  37:52 

Yeah, and there's so much emotion and logic and everything else that just gets kind of mixed up together, right? Because the one thing that we sometimes tell parents who are beating themselves up that way is we'll just say, hey, what if your friend was in this exact same situation? Do you think that they would have made a mistake? Or if you heard that they came back to the hospital that there was like a failing for them? And when it's abstract enough that they're thinking about their friend who's in this situation or something else? They're able to objectively say, No, of course not. This is like, what hospitals are made for is when kids are too sick to be at home? And we'll say, Great, that's totally good advice. If you are giving it to your friend, do you think that you can have some self compassion in the same way that you would have compassion on your friend and tell them that? And that's where people are kind of like, I don't know. That's pretty hard. And it is hard.


Madeline Cheney  38:55 

Yeah, yeah. I love that. I think that's the easiest way to see like, how you should be talking to yourself or thinking about yourself in a self compassionate ways by K. But like, what would I be thinking right now about a friend if they were in that situation? seeing yourself I guess, as that friend, I think that that's such a great technique. Well, thank you so much, Dominic, for coming on. And for, you know, really opening up a, I don't know, kind of a hidden world for us as parents to know sort of what's going on behind the scenes and inside, you know, the hearts of medical professionals that we interact with so often. I really appreciate you.


Dr. Dominic Moore  39:34 

Oh, it's my pleasure. It's so nice to talk to you Madeline.


Madeline Cheney  39:38 

If you loved hearing for my care provider, I definitely recommend checking out the podcast a typical truth with my good friend Erica Stirrings. Her podcast includes guests like this a lot more often than mine does. And there is an episode in particular I loved the has very similar vibes. And in fact, it inspired this episode. So, I will link that in the show notes and you can check that out. If you are a Facebook person, join my group parents of children with rare conditions. It is a safe place for parents to vent and ask advice and whatever you want to do, and to know that the other members get a link in the show notes for that to join me next week for a great conversation with mom Vanessa McLeod, who is mom to two and a half year old IV was born without forearms and hands. Among other things, we talk about the pressure Vanessa faced from not so good doctors to terminate on very ablest premises. It's a really important topic. Don't miss it. See you then.


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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy