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#057 - Dr. Annie Janvier MD

Annie Janvier on the incubator podcast

Bio: Dr Annie Janvier is a Professor of pediatrics and clinical ethics at University of Montreal. She is neonatologist and clinical ethicist at the Sainte-Justine University health center. She holds a PhD in Bioethics and co-directs the Masters and PhD programs in clinical ethics at University of Montreal. She works first hand with patients and families confronted with difficult decisions such as end-of-life issues, and decision-making in the face of uncertainty. She is also the parent of three children who had or have healthcare needs, one of which was born at 24 weeks.

Her main research interests in bioethics are decision-making for fragile patients and family integrated care in Pediatrics. She investigates parental perspectives regarding intensive care decisions, death and disability and parent/patient/family important outcomes after an NICU stay.

She has demonstrated many contrasts between provider and parental perspectives and examines how to improve our communication with families. She is author of many narratives, publications and books in clinical ethics and medicine. Patients and parents are collaborators in the majority of her clinical, research and teaching projects.



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

Daphna 0:00

Ben 0:45

Hello, everybody. Welcome back to the podcast def nice Sunday. We're back with another interview.

Daphna 0:52

I know we love interviews, and I'm so excited about our guest on today. One of her articles, pepperoni, pizza and sex, which if you've not ever read, I highly recommend you look at was like my aha moment for kind of developing an interest in palliative care. So I'm super honored you

Ben 1:19

you cannot mention the title of this article and not really explained a little bit.

Daphna 1:23

Because I'm gonna leave it like that you link No. Oh,

Ben 1:28

no, you have to. I mean, what is that? What is I mean? First of all, Doug. So today we have the pleasure and the honor of having on the show Dr. NEJM fear. And she is a neonatologist. She is not like a fashion blogger that writes about pepperonis.

Daphna 1:46

No, no. It is about identifying what is important to families and knowing that what's important to families is not the same sometimes as what we think is important to families. That's why this article it's, it's super short, it will totally change your perspective on some things in the unit. So we'll link it and you'll take a look. But let me tell you a little bit more about Dr. John beer. So she is a neonatologist specializing in clinical ethics. She works with patients and families, particularly as it relates to end of life issues. She's a member of the clinical ethics office, the clinical ethics unit and the palliative care unit at the CH U Sanjeev Steen. She's a co director of the Masters and PhD programs in clinical ethics. At the university Ted in Montreal. Dr. John Muir is a clinical researcher and director again of clinical ethics and Family Partnership Research Unit at her hospital. Her research focuses on the experience and perspective of parents and patients in end of life uncertainty or serious illness, particularly as it relates to clinical decision making. for neonates. She also examines how to optimize a communication between healthcare professionals and patients families. And she's investigated the positive impacts of falls the integration of veteran parents or patients into teams in our health care system. So, in general, Dr. John Weir's really kind of revolutionized how we communicate with families regarding the health of their neonates. She's written numerous articles, book chapters, and in fact, she wrote her own book, which we will talk about today.

Ben 3:42

What is the book called?

Daphna 3:43

Yes, it's called Breathe, baby breathe, and that's about her own experience as a parent in the NICU.

Ben 3:52

Yeah, it's a great book. We'll talk about that today. Please welcome Dr. Janvier to the show. Dr. And each of you, thank you so much for being on the show with us today.

Unknown Speaker 4:02

It's a pleasure to be here with you.

Ben 4:06

The pleasure is ours. Congratulations on the publication of your book. It's called Breathe baby breathe with an exclamation point after the second brief. And that exclamation point. If you're a neonatologist, you feel it. For the people who in the audience who have not had the chance to read the book, pick up a copy. Do you mind giving us a brief overview of what the book is about and who's the intended audience?

Annie Janvier 4:31

The book initially was written, I didn't remember I'd written parts of the book. So I had a daughter born prematurely called Violette. I have three children. But one of my kids was born prematurely at 24 weeks and we both parents are neonatologist. So it was pretty traumatic for the nurses in the unit to have to take care of the two doctors Keith was the chief at that point of the unit. And I was like the parent person to take care of our daughter. It was also of course traumatic for us. And one of them ways I had to liberate my stress that I actually I think I was so in, you know, such turmoil psychologically that I didn't remember I'd written a lot of texts and my computer, either angry or sad or reflective. And when I moved from McGill to St. Justin, I actually emptied my computer and found this folder, which was called toxic shit, which I actually didn't know that folder existed. When I started reading the text, some of them were just swear words, one after the other for six pages, but others were pretty intense reflections on healthcare or the void you can feel or things that I wish that I had read actually as a clinician. So I read these they were kind of hard to read, some were totally like irrelevant because they were swear words or just drivel. And a friend of hogwash, Shaquan who's implicated here in the media, and who's the Doctor of my third kid who's adopted, and who wrote books, read them, and he's like, Oh, my God, I need that, like, that's gold, like, you know, like, clinicians should read this. And parents should be able to read this too, because I'm sure some parents feel like that, but they may feel their crazy feeling like this. And actually, it's like to normalize emotions, and to speak about the living experience in a narrative way. So while you took a bit long to is, because if you read the book, you'll see there's a lot of details about my daughter, who didn't know her story who almost died, we almost stopped the respirator, in order for her to dine, to avoid, like, because she was dying at some point. And finally, it didn't happen. And I didn't want people to know about this before actually telling her the story. So I felt there was some things she needed to know. And she needed to give some kind of consent. I mean, she was 10, when it was published in French, but she understood. She lives with two neonatologist so she hears baby stories all the time. And she's proud of her story. So she's not ashamed of anything, because we were pretty open with it. But there's also stories of adoption and other stories in our family. So it's some, you know, open family about health problems. And so she, you know, somehow said, it's a good idea to publish it. And to use, you know, there's a picture of her hand in on front. And so I, I didn't want to put her face anywhere, because, you know, she's got her life to live to. So with her consent, and which, you know, at 10, of course, it's like, you know, being part of the family. And there's also intimate details about doctors, I needed to check like, is it okay, if I speak, I described you by name, and there's, you'll see their stories of other family. So it took quite a while to get published, but it got accepted at Quebec MEP in 2015, well lit earlier than this, but came out in 2015 in French first

Daphna 8:48

and that's one of the things I love about the book actually is so much of like it was done some of you that your diary like intakes, it seems like when you especially when you are in bed rest and through the early stages, and it's it's like it's super raw and real, which is different. I think from some of the books that we've read, where it's really you're trying to we have people trying to remember retrospectively what that emotionally was like and I think it is valuable, so valuable for for us as neonatologist for people who work in the NICU. But like you said, I think a lot of parents will connect to the motions you describe.

Speaker 3 9:33

Yeah, and that's something to be honest, I, I was very interested in parenthood perspectives. I started researching this like before I had Violette I honestly did 18 years of university without actually hearing about these things. And then you're a parent you think, you know, parents, you think you know the NICU If you think you know, ethics, because that's what you do. And you went to university 18 years and you're like, nobody's taught me this, like, I'm so robbed, like I gave that at least we don't pay much money for education here in Canada, so we're not robbed as much. But imagine like, you know, neonatologist paying 1000s, you know, to, and so I was a parent that was totally lost in my unit because all these emotions of like, guilt, and anger, and I didn't, I wasn't taught about them. So for example, the emotion of guilt. If you're an academic and look at it in PubMed in relationship to neonatology, there's not many studies, yet, we found you know, with families, when we ask them their story, it's an extremely for the majority of families, something that it's a totally destroys your life for the first sometimes weeks, sometimes months, sometimes years. And as a rational academic in neonatology who took care of parents, it's very hard to know why a woman would feel guilty delivering preterm when she had twins or a cervix that didn't work or an infection or rupture of membranes or severe preeclampsia. I mean, it doesn't make any sense, because it's not, there's nothing she could have done to prevent what happened. Of course, there's super rare cases of, of, you know, women using, you know, for example, intravenous cocaine and then having an abrupt show, but in the vast, vast majority of cases, like it couldn't have been prevented. And so we don't even think it doesn't seem rational that a woman who is like, next to an incubator next to her baby, who is so you know, sad and devastated wood on top of it feel guilty. And it's something the guilt is so strong, sometimes you don't even think speak about it, because there's shame that comes with it. And so afterwards, when I've actually lived through that experience, and rationally, I knew it made no sense. But emotionally, it's just gripping, to actually speak to moms, like a lot of moms feel like this is their fault. And there's nothing you could have done. But to repeat it, there's nothing you could have done to repeat it when a baby has neck and the mom thinks it's her milk, and then baby's back on the respirator. And the mom thinks she gave him a cold or her cold, or the dad thinks he should have picked up his his wife every night from work. And it's because she walked home that she delivered preterm or, because she got her hair dyed, it's that's why the baby has a chromosomal anomaly, or she ate sushi one. So this is why like, all these stories are they had sex and the baby came out too early. Or, though all all these stories of guilt are absolutely not addressed. And I never had any courses that told me to address it. To repeat to families, there's nothing they could have done about it. So that one of the topics, for example, in the book is how that guilt is felt in concrete, like examples, and then how to actually address it with families so that we can make a difference, like the moms not crazy thinking this, but also there's nothing she could have done about it. So there's a lot of these emotions that parents live that are not in the literature and are rarely even in memoirs. So that's why I thought it was important. So the book is for clinicians, but it's also for parents. The English book is the French book is actually just the meanwhile, with some stories about other children and other families, and some editorial comments, but the English book is much more academic, with articles and, you know, academic articles to demonstrate that this there studies to backup. There's evidence eventually when we asked families, what they think how we can help how we can help parents cope. So it's backed up by literature to help clinicians.

Daphna 14:43

Yeah, I think you gave us there lots of things you just said that we we have, we're gonna have to talk about because every single point is important. And I think for people, you know, we talked we've introduced you but for people who haven't followed your work, I think you were literally as prepared as somebody could be To enter, you know the NICU as a parent, given all of your preceding work with parents. And the fact of the matter is, it sounds it sounds like there's, there's literally nothing we can do, you know, to prepare people for an emotional experience like this. And if I can, if you don't mind, I'd like to read a passage about some of these, you know, emotions of guilt, and this is still during your bed rest. So, right now, things are going badly. I'm extremely sensitive to everything happening around me the least movement, as well as the encouraging messages from everyone. Even though I know from a medical point of view, it doesn't mean much. I'm trying to remain optimistic with everyone who comes to visit, my head is spinning, I have a lump in my throat, I'm lying to blank still trying to prevent contractions trying not to move, I'm counting my breaths. And time stands still, the day is punctuated by checks of my vital signs, administration of antibiotics, emptying the catheter, and so on. I wanted to further move on when something happens to our child, we look for our for the guilty party. And more often than not, we blame ourselves, I should have done this. And if only I had done that, but no one is to blame in such a situation. It's just that life is sometimes cruel. And then you go on to say, like you've mentioned here, all the things we shouldn't say to moms about things they could have done or should have done. But it sounds like I mean, we really need to do more we need to address head on the fact that they're having these not not trying not to make them feel guilty, but But assuming they have some feelings of guilt or this emotional distress. What are some other things you think we could do to target guilt in the bed rest time and in those first few chaotic days in the NICU?

Speaker 3 16:56

Well, I think it's scientifically explaining that. Families are not responsible for this and sensitizing others. So like like, you know, in a Chapter like the others can be pretty toxic. You they they call you non stop and bedrest. And they ask, why did it happen? It's the what did you do? What what happened? And it's, it's, you know, it's, it's not something, you know, for example, even when somehow something could be prevented, like it's a car accident that people don't see, they see what happened, but not so it's it's not really set in a in a in a nasty way, by the loved ones are the less little insidious, isn't it? But it's just like, oh, you work hard in the NICU. And I'm like, No, I was actually like, sitting on my butt. Because the first time I nearly delivered early, so there's also like, so I called them the epidemiology experts, those who actually need to find a reason. And, you know, I think we don't do that for like cancer and children Oh, your kid has leukemia, what happened? Oh, you live next to an electric pole or whatever g fight whatever these P anybody has to you don't eat bio food or this is not said to parents of kids with cancer or with meningitis or, but for some reason, it's something that's I guess people around us need to perhaps comfort their own parenting stories or just stating stories or when they project themselves in the future that this won't happen. But it actually happens 10% of the time that a baby comes out early, or you know 1% of the time extremely, extremely early like Violette. So but it's that's what's hard. It's to justify to everybody as a neonatologist. No, it's not my diet Pepsi. No, it's not because I was standing up No, we didn't have sex in the week before. No, you know, all these counter ideas I get through all that you have to like, but imagine a parent who actually doesn't know that rationally. And thinks about is it the Diet Pepsi? Is it the coffee in the morning? Is it the sex? Is it that I picked up my other son is it because I empty the laundry too often? So I was even walking in the evening, or the sushi that I ate that I shouldn't have eaten or you know, all the things you're not allowed to do during pregnancy. Nowadays, like the cheese maybe that was like on rice and so people really think about all these things and have to find a reason for this cruel, you know, accident of life, to kind of be in control or So the questions actually hurt if you don't know anything, but even if you know stuff and you know, it's not your fault. It's difficult. So this, the first questions is, why did this happen? Or why did it happen to you or to try to find reasons for loved ones is very toxic. So I don't know, I often tell families and I've put some some videos on YouTube, like how and there is a chapter in there of, like, distribute this to the loved ones before they come into the room. And these are things not to see, like, why did this happen? That poor woman has to explain again, that she lost her membranes after they had sex. And I tell women, like everybody has sex, imagine we'd have nobody living in the population, you had sex, you lost your baby. I mean, forget that, like, Oh, that's not evolutionary. So I, I have to almost like, you know, make jokes to family or explain to them rationally. Because the, you know, when women cry when I say there's nothing you could have done to prevent this, and I say, you probably believe there's something you could have done, and you're replaying the film, and then they, you know, they nod their head, and what do you think? So, sometimes, it's something like, you know, I use this new like, Sharpie pen, and I put some some things, it's like, our, you know, outrageous how it's not that, but often it's like about sexual intercourse. And I'm, like, you realize, like, what you're thinking like, all these women who need abortions everywhere in the world, they should just have sex, you know? And if it weren't that well, like, you know, there's no, like, what you're saying. So I almost, you know, have you have to almost push it sometimes to the limit of rationality. So, parents don't feel it's it's their fault. But a lot of dads to feel the or or partners feel the guilt of I should have helped more in the house, I should have done more of the task. Why did she, you know, lift up our son who's two years old, and is super heavy. And then she ruptured her membranes, but like many people live their sons and don't rupture their membranes. It's so it's

Ben 22:24

in the book, there's one section that exemplifies exactly what you're saying, when you're describing that you're going into preterm labor with violet because of cervical income, incompetence, right. And you talk about the fact that we talk about the incompetent cervix, and how how bad it makes expecting mothers feel. And you say, imagine how you feel when you hear you mustn't feel guilty for giving birth prematurely. It's your incompetent cervix. And and I think this is something that touches on the idea that you suddenly become hypersensitive to every word and everything has doubled, tripled the meaning. And and I think that's something that across the book, you really make a point to emphasize that the words that we use in and around the NICU in and around NICU parents have to be very carefully chosen, because of that state where parents really, hyper focalize on every term that's being said.

Daphna 23:25

Yeah, I think that's a really good point, because we exactly like you've heard of them. We say to parents, well, it's not your fault. It's your it's your cervixes fault, or it's not your fault. It's the it was the preeclampsia, you know, there's something wrong with the placenta. And I think we don't always we can't understand, we don't realize we don't give enough sensitivity to the fact that those are still parts of the person, right? Who, who feel a responsibility over like you said, their anatomy. And so using those as the definitive explanation is not totally helpful, either. And we kind of glossed over it, but I think if you do something so artful, that I hope that our listeners heard you say, you invite parents you say, you know, many parents or I, you know, many parents feel this way, I wonder if you're feeling this way that that you're worried it was something that you did or could have done differently. And when you give parents that space, they just open up about, you know, that comes question after question after question of well, yeah, I wonder if it was this or if I came in sooner or if I you know, I think giving that's an intervention we can do is giving parents the opportunity to ask those questions. So I'm really glad that you brought that up because I think that was so so artful.

Speaker 3 24:45

Way to ask these questions. Anyway, anywhere in the NICU is the some parents, other parents and if listeners can remember something, the audience for example, you're Her babies intubated, the nurse says do you want to stay? Like, okay? Or do you want information on eggs? Like, okay, what are you going to say? No, like, you know, I'm not I'm not in a mood for information, like, no parents will say, say no. And then so you're, you're kind of forced to stay for an intubation because you were invited to and you couldn't say no, because you don't know what kind of parents would say no, or you listen to the information you don't want to hear about. And then people say, Oh, she's in shock. And she doesn't remember no, she's just not interested. Sometimes. So, for example, to say, you know, some parents want a lot of information. And other parents want to know the big picture. What kind of parents are you are some dads love all this stuff on the respirators, and others are like, geez, I've got enough plumbing in my life. Like, I don't want to hear about it. Just tell me if it's working. And a lot of dads will say, Oh, yeah, just whatever, just the ballpark. I don't need to know about this. But we actually go, I was like this before out of your way to explain the rest to parents, and then they're all stressed and like, Oh, my God, there's gonna be a test. I need to remember this. I don't have a good memory. Right now. My concentrations are good. I'm not sleeping. And then when you speak to families, oh, the RT came, he explained this to me, What if they come back to ask what I'm like, they're not going to come. But like, all the pressure is taken off with a some parents, other parents, like some parents want to stay in their room while the baby's intubated. Because it you know, seeing is better than imagining and they feel in control and others is way worse. They just see these images afterwards, and they can't sleep. So what kind of parent are you? So it's a real question about do you want to stay or leave. And there's a lot of assumptions that are very toxic like that parents want to be there for procedures or parents wants to present rounds. But if they don't want to, you can actually show them how to and make them comfortable. But then you can actually empower them. But honestly, I do rounds. I actually lead rounds. But I really don't want to speak about my daughter at rounds. As a neonatologist. I'll just sit there and speak about my parents old stuff, how much milk I pump. I'm not interested in presenting at rounds. But we make it unfortunately, the new normal, and for mining parents about what we think good parents are or what helps them when sometimes it's actually destroying them. Somebody who's afraid to speak in front of strangers that has five people in ours is supposed to describe their baby when they don't feel like it's their baby. And people are like, Oh, she's beautiful. She looks like you and the mom thinks, oh my god, she looks terrible. But I find her beautiful. So all these assumptions of what helps parents can actually harm them. So I think it's the some parents, other parents is very useful.

Daphna 28:06

Yeah, you know, we are we talk so much about individualizing medicine, but something I think that's really lacking is individualizing our communication and I think that you do a really good job of describing how important that is. That actually brings me to my next point about our, our kind of our counseling, even our prenatal counseling, which again, you have studied extensively, but you bring a whole new perspective, I think to it as a as a parent. You talk a few times about how again, since you are the expert in your unit, you wrote the handout that you give to parents who are having preterm labor. And you said I just realized for real now today, the way that neonatologist talk to pregnant women is bizarre. I knew it was weird, but not this weird. I never spoke about all the possible regrets feelings of guilt, the possibility of another preterm delivery to pregnant women before and yet these are the only things that I am thinking about. Keith and I know every number and possible outcome, we have a complete and detailed idea of the possible disaster tree and a good understanding of what parents face. But numbers I realize now do not help us. They do not erase the uncertainty about what will happen to our baby. First, we do not know when she will be born and then we do not know whether she will survive. And if she goes to the NICU anytime within the next few days, it is more likely that she will die than live but then every day the stats change, but the uncertainty continues. And I wonder how this experience specifically kind of changed how you do counseling in the unit and and if we can learn from that because I think so much so many of us in training, learn to use the calculator and we said Hear hear the numbers. And but you know, the numbers don't matter when you only have one baby, right? They matter when you have hundreds of babies.

Speaker 3 30:09

Yeah, and that you can I've given I've got a specific talk of an hour about personalized prenatal consultation as opposed to standardized. And you can go online and find that if you're interested. But you know, and the to summarize this, because I won't speak an hour about this, but you could get me started and I would. There's actually communicating with the families, unfortunately for doctors in the last few years has been about transferring numbers really like information transfer. And doctors really believe that if we transfer the information and the numbers, then the parents will know what to do. But then when you know all the numbers and you write the sheet, you don't know what to do. Right? So the questions that I always start with, do you have a name for your baby? So some families don't have a name. Others do for 10 years, and they've been in infertility treatments, and they know exactly in the tailor detailed story about their child's life. Others say well, I, you know, examples of parents answers, I wanted to call him Richard, because there's a firstborn in every family that's called Richard, but we won't because if he dies, there won't be a Richard in our family. And then it's an opportunity to speak about Yes, there will. I mean, Richard will have been there but will have either passed away or survived. But there will be a Richard like Richard will always be in your heart. He won't, so to speak about if kids die. And so that's one of the questions others is, you know, do you want, some parents want detailed information? So parents, some parents really benefit from decision aids. And to be honest, it's the minority of parents who want them and other parents want the big picture, majority die majority survive? What kind of parent are you? That's another good question to know how much if you speak and parents don't want to hear all that information, they'll they won't listen. Or they'll listen and be traumatized, or they won't remember the right part. So if you don't want an information and you're in a bad state, it you won't remember it. And another question I ask is, What scares you the most? And parents need to speak about what scares them off generally, if some don't want to speak about it, and then they're free not to speak about it. But if they're scared about death, what happens when a baby dies? or disability? What happens with parents who have disabled kids? Or a couple of what happens to couples or other children? Or can I ever be a mom like some some things that are scary have nothing to do with the baby? It's I'll never be a mom. It's I've tried for 10 years I've mortgaged my house I've are a couple is going through hard times. And this is like I'm scared I'll never I'll never be a mother. And some so some of these messages you can speak about the baby and disability and ROP and all the three letter words the neonatologist want to transfer into moms. But that panic at that point is how can I do this? If I'm not a mother? And just say, well, you will be a mother, you may be a mother for several hours or, and these often to be honest, when you ask for the name us how much information and what scares them the most. You You know what they'll decide. They tell you, they don't. And some parents are very still don't tell you like I want to try this. I've tried for 10 years to have a kid or you know there's disability in our family. I know what it is I'm not sure I can can face another death this year where they give you their narrative into what kind of decision they want to take or they will outright tell you. And then it's to to personalize decision making. So some parents want to take these decisions on their own others want to the US we decide together after speaking together. And others want the doctors or somebody else to decide what kind of parent are you so these are in the terms gestational ages, you know, I don't see that at three, two weeks when the baby generally needs CPAP or nothing. But when there's a gestational age or an uncertain situation of Have you know some some types of other disorders where babies have life limiting illnesses? Some parents want us to decide. So we can have a staff meeting and tell them we'll gather around the 14th neonatologist speak about your, your baby and all the characteristics and come up with a recommendation if that's what you want to have. And I think we've stopped doing that we put a lot of the burden on the families who don't necessarily want to be empowered to decide. Sometimes it's the chief of clan that decides sometimes it's the grandfather in another country who's also a doctor. You know, and sometimes we give recommendations to family and they go with it, and they don't have to live with that burden. But we insist on shared decision making, and we insist on informed consent, were for these kinds of decisions. Many families in our cities tell us they don't want to share these decisions. They don't want to have the part to decide the day their kid will die. For example.

Ben 36:09

I'm actually very interested in this in this topic, because in the book, we get the unique chance to go through this decision making through your perspective. And I feel like you and your husband, Dr. Barrington, you guys are very, very knowledgeable neonatologist, you know all the numbers. But I'm wondering if, as you have to make this decision for your baby. Does the experiences that you guys have had in the NICU have negative outcomes take a bigger place in your psyche? I know that from psychological research, there's a lot of data showing that we do get more impacted by negative outcomes and by losses. And so even if in your NICU, the outcomes are like most NICU overly positive, do this do the experiences of these few babies who have had terrible courses way more on your mind and suddenly really infect and poison your decision making? Or were you able to actually keep a level head when it came to the assessments that you had to make?

Speaker 3 37:21

I think it's a good question. There's a mix of yes, we're pretty pessimistic and neonatology obstetrics too, I mean, I, my friends about very preterm babies not we're generally optimistic about our job, but in terms of very preterm babies, there's literature that show that we see it, as you're saying, been darker than it actually is. We underestimate survival, we underestimate outcomes. I was actually lucky to have heard to Dr. cirrhosis, a girl who's a hero of mine and have read her literature like I was reading her literature while I was doing my PhD, about quality of life, and how kids are happy about their outcomes, how families, you know, despite the hardships could adapt, and we're resilient. So the problem is when you're there, I mean, I think as a neonatologist, we were used to the disaster tree apnea is Brady's Okay, isn't an infection, is it theirs? Is it a neck? Is it so we're used to actually anticipating crap. So I was I'm more of them. I guess I was more of the pessimistic person. Keith was more of the optimistic person. Like, oh, no, here we go again. But the here we go again, happened often I mean, you know, oh, here we go again, you know, pneumonia, and then septic shock and then trying to die and then oh, PICC line and, you know, infusion in her thorax, because we've been meet this. And so that, like I was, I guess, more my way of approaching life like cynical and making stupid jokes out of like, this adaptable, this way of seeing life and that's the way I am in most of the hardships. Whereas Keith, for some reason was very optimistic. Not not stupidly optimistic. But and maybe that's it's the way and that's what I reflect in the book. It's the weight good couples work when somebody's down the other person has to say, Well, look, there's a sign she started to pee again. Your letter Yes, she hasn't peed for two days but she started big you know, gray to this we should like have a party and so the way our interaction was and when he was more down, I was a bit more up. And that's what's hard to see, I guess is it in uni? topologists couples or families who don't work this way of women hearing that if you hadn't done that the baby wouldn't have come out earlier or is it your milk? Like, you know, people actually asking actively in the room if it's the mom milk, mom's milk that caused this, I just, it's very hard to control the neonatologist. And, and you know, so I lecture the people who do this in a polite way. So it's Yeah, so I think maybe it's not a satisfactory answer. I was, I guess, more pessimistic. Sometimes it's to protect yourself too. Because if you see things too optimistic, and they never happen, you can't, you know, continue getting up in the morning.

Ben 40:47

I think I think it's reassuring. I think it's, it's reassuring for us to know that it is maybe normal not to remain very pragmatic, when situations like this arise where it's deeply emotional. And maybe it is the expectation shouldn't be that yes, your neonatologist is supposed to be, quote unquote, better than that and look at the situation very objectively. No, I think I think it's very helpful to hear your perspective. Talking about the nature of the neonatologist, I found something throughout the book, that seems to be I mean, as neonatologist, we love control, right? We feel like it's a field where we have so much control, we have continuous monitoring, we know so much information on our patients constantly. And throughout the book, it seemed that as as control was being taken away from you in in how Violet was was doing, and things may have deteriorated, suddenly hope expanded. And then this was this mutually exclusive relationship between control and hope. And, and maybe hope had less of a have had less of a place as control was being regained, and hope took a bigger place as control was being lost. Is that Is that how you felt throughout the hospitalization? And do you think this is something that other parents can relate to?

Speaker 3 42:07

Yeah, I think there's different types of parents and I, I, I tell them that in the NICU, if you're a control freak, who loves lists, and you know, what we do in neonatology, we check all the gases, and then we get evening. So we're not very good, psychologically, in terms of parents in the NICU, because that control is robbed, because we don't know we know the uncertainty of if the co2 is high, you turn up, you know, the whatever and whatever and if, but that's not the uncertainty you want, you want the uncertainty get my kids going to survive, we're not going to get a call during the night that she's trying to die again, we're going to go home at some point, and our couples going to be fine in our family, and then the other kids and that you've lost control. And to be honest, some parents are really good at that. They're actually people who in their lives are used to, you know, in Allah and, and like, nature will send me whatever, and I will deal gracefully with it. And when I see these parents, I mean, all because I was absolutely not like this. But then I tell parents that like some parents who are used to being in jobs are in situations where they control the household and this and the finances and, and now here, you're in a lack of control area where we'll together try to regain control, while other families just go with the flow. Or other parents go with the flow and take with life sense them. And there's still things that we can help you go with the flow and parents can quickly identify which type of parents they are. But then there's some control to regain. And this is what nurses helped me out. I didn't know at all as a doctor what how to do this, but you know, and I give suggestions in my book, this is what you can control. You're pumping your milk, you're bringing your milk to your kid, you're coming to the unit, you can read a book to her we'll give the bath together so it becomes a way for obsessive freaks like me to actually have a schedule and say I've done this I've gone through this I can do this again, like I I'm providing I had Excel spreadsheets of how much milk I had and how much he was taking and you know, like my inventory that was spread all over freezers in the street. But so you you have to regain another type of control. And for some parents, it's actually easier. But even the the types that you know, are amazing at gracefully, taking in whatever obstacle and transforming it into something meaningful can have even problems like wondering what Why did God send this my way? Or why? Why does I quit? You know, things that parents tell me why? Why did God decide that my baby would be sick? I mean, I'm praying every day. And so there's sometimes very tough to live for these families anger towards the God they, they were always faithful to questioning their religion. But this is also important to have conversation about these things, because it's things parents can feel anger towards why me? And you know, it just say, you know, nature's a bitch, I don't see.

Daphna 45:43

But that probably does resonate with some family. Yeah, there's

Speaker 3 45:47

so I find people who are control freaks like me and who respond to structuring their day. And, and or the social worker can help reorganize, like, you know, the finances, the parking lot, the all these things that we want under control. For all the parents, social workers are amazing social workers and psychologists and others who are more gracefully, you know, that types who go with the flow, but still, there's different challenges for those parents. That's, you know, that's, I think things that can help.

Ben 46:29

I wanted to ask you one more question about your role as actually I have more questions about your role as a parent in the NICU. But I found throughout the book that there was an interesting, there's, there were interesting shifts in the use of pronouns, because I feel like your your, your daughter was hospitalized in the NICU that you were working at. And I was expecting you to speak of the team there as we and you use the pronoun they so they did this, they started her on this medication. And I was wondering if that feeling of separation between you and the neonatal team was intentional, subconscious or necessary, maybe in order to remain a mother and keep your sanity.

Speaker 3 47:18

I really didn't feel like a neonatologist at that point, to be honest. So I was really I didn't feel like we did anything, I pumped my milk. And I just waited every for everyday to go through and for the next day to go through and I just hope to be three months from then and fast forward life. So I didn't really feel like a doctor or I think that was very different teeth, check the X ray and secret pretending to be a dad but I think he would have probably used some we and to some of the things and there's many examples of like the family integrated care where I speak about it in my book that like we were very good. We now I'm using we and they needed to quickly do kangaroo care skin to skin to quickly have show parents how to to feed their kids to quickly integrate parents into rounds. And that was really not working for me. And I was responsible for these things as a doctor. And for me, I'm like, I know I can intubate my kid and do the LP but to be honest, I really don't want to feed my kid. This is not for me. What a parent does yes, if she had a you know, some end problem I do this right away and take her home like I changed still nice for my my third child and I've done things for my kids that were medical but in the NICU, I didn't want to present it rounds I didn't want like I didn't really like skin to skin care at all. And it really harmed me for the nurses to say you love this. Moms love this. Like the moms feel that proximity like I didn't feel any proximity I was terrorized and yet I know how to resuscitate a baby like I'm not scared of babies. So these these words can harm moms to say like you will love this Mother's love this. I never use these words and I say some moms they feel the connection back others it takes some time others are just so scared the first times and don't feel that bond but it's going to come and now when I say this like there are mothers who say I just hate this I just count the hour and and others adore it and they feel the closeness back but if you tell them they're supposed to adore it they're not gonna say the don't find their baby beautiful. They don't feel like a mom. They don't bond with their baby like that. That will actually make it much worse.

Daphna 49:58

Yeah, I think you were super clear in the book about how hard it is to feel like a parent in the NICU, especially when the tasks we are giving parents are not things that they envisioned as part of parenthood. And so, you know, I wonder, like you said, like tube feeding like they don't, that's not what they envisioned as part of parenting, right? So are there skills or tasks that you think are better aligned with feeling like a parent. And I see that knowing that, what I hear, what I hear you highlighting is that we should ask parents what they want and do not want to do and keep a list at the bedside about what's important to them, and what makes them feel like a parent. But in units who cannot individual are not able to individualize care as much, are there tasks that are more parents alike, than we tend to offer?

Speaker 3 50:58

So we just actually did a survey of parents in our unit in the unit and that follow up, we just published it, it's called the ethics of family integrated care, where we asked parents what they had done in the NICU, what they think all parents should do, what should be offered, and you know, all these questions about many tasks, and all them the parent nursing tests, such as changing the diaper, giving the bath, reading to the baby's skin to skin, all parents think parents should, should and should be held to and should actually, we don't tell parents change the diaper. We say, Well, this is stressful at first, it's normal to be stressed. So. So these were tests that were accepted by finally yet there's really little things that can harm like a dad said, he put the diaper in a tiny diaper. And then the nurse said, no, no, you're supposed to fold it on top, otherwise, it goes up to the armpits. And then the dad didn't want to change the diaper for for two weeks, because he felt that this was a criticism, although I'm sure it wasn't said in the way that that felt. So there's tasks that are general nursing tests that parents, all like 98% of parents thought we should do this, we should be empowered to do this, we should be helped in doing. And then for presents at intubations, you can read the study tube feeding, it was about half the parents. And interestingly, the parents who did it felt empowered and felt other parents should be able to do it. And those who didn't do it weren't as like didn't feel they had to do it and then feel other parents had to do it. So somehow in our unit, we're able to do this, for certain things. Like eye exams, some parents really want to be there arrive early, participate, speak to their baby and others, they just hide and avoid these moments. So I think it's important to ask parents, some parents, other parents like and now I say that in the unit. In our unit, we've asked 100 parents, half of them want to stay during intubation because you know, control and half of them want to leave because traumatizing not, you know, not something that's important for them. What kind of parent are you? And I think it's possible to honestly, as that two families and not assume they leave or assume they stay, it's it doesn't take very long to see some parents or their parents.

Daphna 53:38

Since we're talking about moving through the admission and how, like you said, there were setbacks, you know, for for your daughter, and so frequently for other babies. I wanted to touch on this article that actually you do put in the English version of the book. It says knowing to when to withhold life sustaining interventions in the delivery room is important. But in our opinion, adapting the level of care in the NICU to prevent late deaths, serious morbidity and significant burden of care is an urgent line of investigation. Every time a fragile neonate in the NICU has a serious adverse event such as a significant neck respiratory failure, continuation of life sustaining intervention should be questioned. And I this was brief in the book, but I think it's an important point that's not often discussed that sometimes we we say when we've made a decision prenatally to resuscitate then the it's go go go no matter what and then, you know, I think this was a valuable point about in engaging families in the discussion when the situation has changed. I'd love to hear your perspective on that.

Speaker 3 55:03

And that to there, the I didn't write that much in the book, but you'll see recent articles in on how to communicate with families when speaking about life and death and even some videos. One is it with open pediatrics if you want to, the audience wants to watch it. Again, we are in in a paradigm of giving parents all the information, and then asking them, you know, should we remove the tubes or your kid dies, I'm making this more graphical than necessary. We do this with a lot more tact. But most families don't want to choose the date of death of their kid. And it's interesting that there's so much literature about counseling prenatally, when the the minority of babies dying in the delivery room where babies die in the NICU, they don't die in the delivery room. So with Edward for having a colleague, we looked at how babies actually died in the NICU, and some die without withholding or withdrawing anything with CPR. In some US units, it's the majority of babies die like this in our unit, it's very rare. Some babies die wild with holding CPR, but not withdrawing the tube so on the respirator. Babies are dying and parents don't want to stop the respirator. Others die in their parents arms because we've stopped the respirator and others are not unstable. As these three first categories are stable babies for whom, for example, you know, a term baby with his fixya who who doesn't breathe who couldn't be kept on a long time, but we decide to stop the respirator because of quality of life concerns. And all these conversations are different so a baby actively dying ready Karthik and 100% Oxygen there's no reason what if he's dying, or she's dying of her lungs are a sudden pulmonary hemorrhage and nothing's working to ask if we're doing CPR if the lungs are full of blood and the baby's marbled, and the it's a long problem. So unfortunately, there's many asking families about should we do CPR do we don't want us to do CPR will you write a DNR in the chart, and this doesn't lead often to to interventions that are beneficial for children. So when families we have conversations the they gave us they give us their goal of care. I want to go home with my kid I've got I'm afraid my kids tired, I'm afraid of disability I'm, we get to know them. And it's also okay to give recommendations to say the Tricia is not well. She's been in the unit for three months, she keeps getting worse instead of getting better. You know, if you're asking if you're reading to baiting a child with severe BPD, and, and, you know, lung, pulmonary pressure, extreme fall new pressures, and on steroids and with a short gut, and that happened to you a month ago, the kid was way post term still not eating, still not growing, still not breathing well, and we decided not to re intubate her. But parents wanted her recommendation, we gathered the group together. And we knew this baby would stand the hospital another six months to a year statistically and that the prospect of having her eat on her own and breathe on her own. Without to a lot of burden of care, knowing this family was not what they told us they wanted and we gave them a recommendation. That could have been very different from a family who said You know, we're gonna move right in front of the hospital and live here for five years and stay in the hospital and I quit my job. And so I think it's okay to give recommendations to families and to gain engage them in the process. And we're afraid to do this. So we give a lot of options to families and ask them to choose. It's, I call it the Chinese like buffet menu of we want to do this we want to ECMO we want to do that we want during the week when we want to cardiac massage we want and then parents are like, Oh my God, I want that. Like why aren't they giving this my baby's not valuable? I'm gonna fight for my baby. When in fact we're doing a lot of things. Palliative care and end of life is is huge. It's not nothing. It's so instead of speaking with everything we won't do there's a lot of things We can do in these situations that we don't. And that's another like to our target. There's videos we have on how to like there's a some parents, other parents. And I often ask parents like, we're in a hard situation. You're telling me Trisha is tired? Yes, she's tired. She doesn't want to fight anymore. Well, don't ask her about DNR and Miss cardiac massage and CPR, she's told you, this is her message of please stop. But yet people need to prescribe things like write them in the chart, document and explain and then really go back to check with that. Mom, you told us you what I understand is you don't want the list of 15 things we're saying here. And then the mom will say, Oh, my God, I can't do this. Instead of just saying this is what will happen when Trish becomes bradycardic, we'll put it in her arms, put that song of yours that you always listen to call the people that are important. And it's a Yeah, I think there's a much better way to do things than it is done in many situations.

Daphna 1:01:14

Yeah, what it what it sounds like you're describing is really an an actual opportunity to, especially for parents who have clearly made a decision, even with you know, without it without having to go through all the steps to give them a memory or an opportunity to really be like a parent by by, you know, holding their kid loving their baby in a way that nobody else can. And in that time, and I know you've studied bereaved parents also. And if you can talk a little bit about you know, how parents experienced that when they've had the opportunity to do that versus when they haven't had the opportunity?

Speaker 3 1:02:02

Well, it's tough because we I mean, I guess some families spoke to us when they didn't have the opportunity. But it's so rare now, not to be able to bond with your baby at the end of life, that we didn't have the story from these parents. So we know from studies that I'm seeing your baby is, you know, there's been a big paradigm shift, you know, like 50 years ago, like babies were just swept away, and parents didn't know the baby was not viable. They never checked children. They imagined all kinds of things. And that's no longer done. We also know that forcing parents to see their last moments when they don't want to see them is not something that we should do. Preparing parents for this is something that is is, you know, helpful in terms of grief. Speaking about it in practical terms about what will happen about how long their heart rate can go on, gathering memories, explaining to how the other children with will live through this, giving the opportunity sometimes for older kids to be in a family picture, or to have a picture of mom, dad and the baby. And it seems at that time that it's not something parents want. But generally when we see them, and this is not all published data, when when we see them afterwards, when we have celebrations for not celebrate, we call it city blasts off haseo. So it may not be the right word in English. For every year for brief parents house celebration of life. Yeah, so I wasn't sure if it's a good English word, it looks like celebration time and it didn't look very good to say this word in English. So So I think it there's a lot of positive and we're, we're good, I think in neonatology and creating these opportunities. But we're sometimes a bit too good at making things drag on or not good enough to know when to stop in certain times. And the thing is, we're also wrong sometimes when we think your baby's going to die, and the baby survives. So there's a lot of humility in the in the process, and certainly families help us in you know, doing what what is right and improving what we didn't quite do. Right.

Daphna 1:04:43

That was very helpful. Thank you. Question,

Ben 1:04:48

if you go ahead, definitely apologize.

Daphna 1:04:50

I know we're running out of time. But before I know Ben wants to ask about you know, the actual writing of the book, but something I think that we Don't spend a lot of enough time talking about a neonatologist discharge and discharge readiness for parents. And so again, you were you're a neonatologist, you know, you know what the follow up looks like. But I wonder and you know, and you touch on it in the book, but about what discharge looked like and some of the emotions around discharge, even for somebody who is really familiar with the, with the process?

Speaker 3 1:05:26

Yeah, I think there's a now our voices pants project, they tell us the same thing that most parents are not ready for discharge, and we don't do it in a gradual fashion. We're very good at giving diagnosis and labels, your kid has BPD, but not very good at explaining what it means to be home and oxygen. If you have a dog, for example, I've never got that taught as a fellow. But now I read the voice of parents project, if you have only one child with oxygen, nobody goes about and trips on the oxygen tubing. But if you have a dog and two other toddlers, well, you'll have to do some guidance to parents about this, which we don't do, which they find out on their own, which they go on parent blogs and actually or Facebook pages and, and social speak about these things. So we're not very practical, we see you your kid may have CP. Okay, what does that mean? Well, you may have stiff leg walking. And so people imagine cerebral Palsey much worse than it actually is generally for premies. The The best example of where parents are most angry in our studies that we're publishing, while we're writing right now is daycare. So we don't tell parents, you know, your kids born at 24 weeks, you shouldn't go to daycare for the first year. So like when they're born, we can tell them that we know, we know that child is likely to go home with BPD or to have some lung problems that it's not a good idea if he catches a cold. And so that I figured out on my own that with my elder that was always sick that he wouldn't go to daycare either. And I organized to stay at home six months and have somebody else to come for six months. But these conversations can happen after a month in the NICU, do you have a grandma that should come because they take so much planning friends or Algeria and we can sign the papers and organize this for the first six months. And we then the parents are like, Oh, crap, you know, and usually we don't even tell them in the NICU. They the follow up doctor tells them when the kids three months old. So it's there's a lot of things we can do much better. For discharge.

Ben 1:07:43

Thank you. Doctor jockey, I wanted to ask you about the writing process of the book, because the style is almost like a diary. And and I wanted to commend you on the courage, I think that it takes, it doesn't feel as if you polished much of the writing in order to make yourself look better, like you were very vulnerable in in this process. And that's and that's really, I think, what is the power of this book? I wanted to know if you if what we're able to read in the finished product is an edited or completely unedited version. And what kind of courage did it take to say okay, I'm uncomfortable putting this out there myself.

Speaker 3 1:08:34

So in the toxic shit folder, I suppose there's actually some things that were like very rude and you can actually publish. But the English version is the extremely pure version compared to the French one. So there was a lot of fuck tummies and Hitec tummies. So I was told that there couldn't be like the density of swear words was too important. So it's like a nice acuter version. If you think it's raw, it's because you're a good English speaking person. But the French one is a lot more raw and at some point and rage or like despair. And I was actually there's also a lot of even in the French version, like I call it the forecheck dummies, but the person who read it like so I went through like when you submit a scientific article, you have reviewers, but they actually know what works. So if you have too many swear words in the pages desensitizes the reader, so you have to choose like in the six bucks, which font do I want to get? The most important? Well, this is in the French version, but in the English version is which Firefox I put in the book. So then there's the so there's all these things that I've learned like It repetitions or explaining to the reader what this is because if I say like, like, screw that breast pump, like what's the response? What's the context? So there's context I had to put in. So things I had to adapt things I had to make less, you know, less vulgar, I guess. And also in the process. Initially, they wanted me only to have the story of Violette, which I thought was very unfair, because, you know, we're too educated, high socio economic status. neonatologist who have a girl with steroids, who ended up with a good outcome she still has, has an has has problems and had problems along the way. And it's not because what we did was the right thing like some kids dying, some kids are have more problems than feel it, some kids have less problems. So I wanted there to be stories of other families. And this is why I've reached out to families have like in some sometimes the mom dies, like in one of the story. And sometimes the baby dies like in Gabrielle like pizza and sex, love the story and other times the kid has other problems or the parents do other things that are amazing. So I wanted there to be a diversity of experiences to in the book and not just ours to like we're not the Lance Armstrong's of No, I've neonatology or Brangelina is or whatever. So. So that's there's also other stories too, that I had to reach out put in, like, what are the because I reflected on this too, and I thought it was like unfair to just have the fairy tale. It's not a fairy tale. But the good ending story in there.

Ben 1:11:58

Yeah, I mean, in the book, at some point, you talk about that, forget, it's a, it's a morning where you say when things in your household resist you. Like, if your laces don't want to cooperate, you'll just cut them. And even if I wasn't in your position, like I've been in this situation, so many times where life in the NICU is so frustrating, and it's sometimes just plain torture, and you're just not going to tolerate anything else around you or resisting or when you can't open the jar of pickles or something and you're like, you know what, I'm just throwing in the garbage that's it was so in French Woods's receive, right it was I was enjoy that so much, because I related a tremendously. So thank you for that. And thank you for, for being so open about how you felt. And it really for me, it reminded me that despite parents sometimes feeling lost, feeling hopeless, there's also a component of anger that that we need to address because it's, it's very much natural. And the way you describe it, the way you write it, we completely understand where where things are coming from, and the frustration of the yo yoing of the course of the NICU. So it's actually really helpful. And you have even in the book, like, almost like the little sign outs, the little clips of the sign out of and that that to me was as a neonatologist. That was that was kind of nice. So so thank you for that.

Unknown Speaker 1:13:20

You will love the French version of the book, actually.

Ben 1:13:23

I'm actually gonna get it. Yeah,

Daphna 1:13:25

yeah, I was gonna say now you have to read it. And then

Speaker 3 1:13:29

I'm like, that's why he called me on the show a year and a half year or so. Yeah.

Ben 1:13:32

I'm actually, yeah, I'm actually from Marseille, France. So there was a lot of things that I could I could see could relate to in the book. So yeah.

Daphna 1:13:44

Well, it's running on me that we're really running out of time, we would have had so many still more things to ask you. And you've mentioned so much of your work that we're definitely going to highlight and on social media and add in our, on our show notes, so that people can see some of these other things, especially some of your videos, which I think are super valuable for people who maybe are struggling with having conversations in the NICU. But I recommend that everybody get their hands on this book. It's so unique because it's it's varied. You get your diaries you get. Especially, I mean, I'm speaking for the English book, because I couldn't read the French book, but you get the papers. And it's just it keeps your attention kind of all the way through it was I loved the book. And I'm a huge fan of your work. So we're going to try to connect people to your work as much as possible.


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