Breathe, Baby, Breath: The Story of a Preemie

Program announcer

Welcome to the Peds Ethics Podcast, where we talk to leaders in pediatric bioethics about a hot topic or current controversy. Here's your host, John Lantos, from the Children's Mercy Bioethics Center in Kansas City.

Dr. John Lantos

Hi, welcome back to the Pediatric Ethics Podcast. I'm John Lantos. We're coming to you from Children's Mercy Hospital in Kansas City, Missouri, and the Children's Mercy... Bioethics Center. On these podcasts, we talk to experts in various aspects of pediatric bioethics. And today, we are thrilled to have Dr. Annie Janvier, who is an associate professor in the Department of Peds at University of Montreal and a neonatologist and a clinical researcher at Hospital Saint-Justine. She's also the mother of Violette, who was born very prematurely. And she's written a remarkable book about the experience of being a neonatologist and having a tiny preemie in the NICU. The book is called Breathe, Baby, Breathe. It was published by the University of Toronto Press just last year. Welcome, Annie.

Dr. Annie Janvier

Hello. Thank you for having me. Tell us a little bit about why you wrote this book. Well, I decided to write a book that would have helped me as a parent and that could also help clinicians understand the parent perspective. When I had Violette, I was already a parent of a quote-unquote normal term child. I was a neonatologist and I was finishing my PhD in bioethics. But I felt extremely lost as a parent. as an NICU parent. I didn't feel like a parent. I didn't burst with love for my baby. I felt like I was in a totally alien world, although I had spent hours in that same NICU. I mean, I knew about the respirator, how Violette worked, the TPN, but I really didn't know how to be the mother of a baby on a respirator.

Dr. John Lantos

What do you think made it so strange and different?

Dr. Annie Janvier

Well, the world is... I think it's a different disease to the NICU or disease conditions because machines do what your body is supposed to do. I also had an incompetent cervix, but I was told not to feel guilty about that. And what really helped me is not my medical knowledge or any kind of facts that I knew very well. But the stories other parents had told me when I was a neonatologist and I had listened to how they felt and how they felt they were crazy and when is this going to end. And that really is what gave me faith that one day this tiny gelatinous blob would actually become a real child, my daughter. I mean, I knew preemies became real children, but I didn't feel it. And it's really the parents' stories that helped me.

Dr. Annie Janvier

I think by, I thought when I emptied my computer when I was changing institutions, I found a toxic shit folder that had many of the things I had written in these moments of distress, trauma, or joy in the roller coaster. And I realized this is what I used to help parents. Some of these sentences, some of them which had swear words, And also stories of other parents. I didn't just want my story to be out there because it's a unique story and all stories are different and all parents are different. So I tried to have a blend of my stories, other stories, and academic chapters.

Dr. John Lantos

So you were really keeping a journal while Violette was in the NICU, but you put it away for a while and then came back to it years later?

Dr. Annie Janvier

Yeah, I think I didn't really realize I was keeping a journal. Because, I don't know, I never saw myself like, you know, the unicorn diary with stickers at the end of the day. And I was actually writing to my computer. And I actually don't remember writing most of the things I wrote. I think I was too much in shock or stress or distress. And it was kind of, I guess, a release mechanism to speak about things I was afraid to speak about others. That's

Dr. John Lantos

pretty amazing. How long was it before you could open that folder again?

Dr. Annie Janvier

I actually fell on it accidentally. When I switched institutions and I was asked to empty my computer, I found that toxic shit folder. So that was three years later. A lot of it was written in English because my first... Language is French, but I think most of the things were too hard for me to say in English. I guess that's my interpretation. So it wasn't even translated by me because it was too hard to relive some of these moments. And some of the things I said were very crude. So it was kind of translated by somebody else and then readapted by me.

Dr. John Lantos

What was the biggest surprise when you read it? what you'd written and then forgotten about?

Dr. Annie Janvier

Well, some of the very raw and crude emotions. Well, some of the things are not published. It's just three pages of swear words. So some of the things were incomprehensible.

Dr. Annie Janvier

Also, what was hard to read is how I didn't love my daughter or the doubts I had that I loved her. how I didn't find her beautiful, how I didn't feel like a parent, how I didn't like to hold my daughter. Things we don't often speak about in the neonatal world and that are very hard to actually speak about to say, well, I don't love my daughter. Is this normal? But when you actually tell parents it's normal not to feel like a parent, some of them will open up.

Dr. John Lantos

And do you think that's because the NICU environment is so alienating, so foreign, so scary?

Dr. Annie Janvier

Well, that's what's funny is I didn't find it scary. I can intubate kids, and I'm not scared of babies, and I'm not scared of the NICU. It's where I work. But I think it's different. You kind of become a parent in a very abnormal way. You don't know your child yet. There's no relationship. It's very hard to bond. The child is not smiling. There's no reciprocity yet. And I think for other disease processes, that happens before a child has an accident, but he's Thomas and he likes this and that, and he likes to be soothed with that specific song and held in this manner. And there's ways that you learn to be a parent to a specific children that... you become a parent of a baby who also looks strange. They're not very cute babies, the extreme preterm. And it's very hard to find yourself also in a situation where you know because of your body malfunction, your baby's there, and now technology's playing the mother role. I think that's all an important aspect.

Dr. John Lantos

And in addition to writing the book, you've also done a bunch of research where you've talked to other parents. What have you discovered from that work?

Dr. Annie Janvier

From the work of how they feel or the parental perspective?

Dr. John Lantos

Yeah.

Dr. Annie Janvier

Well, what I've discovered is we're very factual in neonatology about describing, often describing the field and the children with deficits. death and disability as opposed to survival and quality of life. And what you ask parents about what is important, it's very different often to what doctors think parents think is important. So for example, all the facts that we give parents wanting to help them in a standardized fashion, parents often want personalized information. What does that mean for them? So, for example, the percent risk of cerebral palsy is 8% when you're born less than 28 weeks. We'll try to tell this to parents using pictograms,

Dr. Annie Janvier

but what does cerebral palsy mean for that family? And what family want to know and what I wanted to know as a neonatologist and realize there's not many people who had examined that, there's Sarosh Sehgal who had examined that, is will she be happy? Will she have friends? Will she be independent? How can I be a parent of the disabled kid? What do other parents do? How can I prepare in a practical sense? So not just a tag of medical deficits, but also the functionality, what it means for the baby and the family unit. In an optimistic fashion, too, as well as realistic, to say, you know, it'll be okay one day. You're stronger than you think, and you'll be able to rewrite your story, because most of us are. But the way it works in neonatology is very pessimistic and scary. Even as a parent who knew all the statistics, it's always presented in a glass half-empty kind of fashion.

Dr. John Lantos

So where do you start now when you're going in as the neonatologist talking to someone who's in labor at 23 or 24 weeks? What's your opening line?

Dr. Annie Janvier

Well, I... say why I'm here. Most parents think they don't know what a neonatologist is. They think it's a kind of religion sometimes. Why I'm there doesn't mean that they'll deliver prematurely. Do they have a name? What do they know about why they're there and why I'm here and what is important for them to know? And often with just these three questions, we're able to have some kind of dialogue, but also what scares them the most. What can I do to help? And to actually personalize the consultation. Some parents want a lot of information. Other parents want just basic facts. What kind of parent are you? And to personalize the decision. I think we really rightly... shun away from paternalism, hardcore paternalism. But many parents want us to be paternalistic. In what

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way?

Dr. Annie Janvier

Well, many parents don't want, in my research, for example, on trisomy 13 and 18, about half the parents didn't want to make life and death decisions.

Dr. John Lantos

They wanted the doctor to make them?

Dr. Annie Janvier

They wanted the doctor to make them or another family member or a religious representative and generally the medical team. Half the parents. The other parents, some of them didn't want anything to do with shared decision-making. They wanted to take the decisions on their own. And some of them wanted shared decision-making. But in fact, less than half parents wanted shared decision-making, about 30%.

Dr. Annie Janvier

So the way I engage with parents, these decisions are very hard. It's normal to feel overwhelmed. Some parents say they can't take these decisions. They say it's for another person to decide. Others say they want to make decisions on their own, and others want us to make these decisions together. What kind of parent are you? And I think it's very, some parents, other parents is important, as opposed to do you want information? Or do you want to decide? So as a parent, you think, okay, what are they going to think if I say, no, I don't want information and they're wanting to speak about my child. I'll look like a bad parent. So you say yes, then you don't listen to the information necessarily. But by acknowledging parents are all different and all these ways to decide or think are okay and they're valid, then parents... feel like an opening, like, oh, if other parents take these decisions that way, it's fine if I feel that way too.

Dr. John Lantos

So a lot more listening and trying to figure out what parents need rather than giving them percentages and numbers.

Dr. Annie Janvier

Yeah, and some parents want articles and data and websites, and these tools are, I think, important for these parents. But I find many parents don't want that. They also want to know, what does that mean for me? One percent risk of deafness, but what does it mean when you're deaf and what does it mean for a child and a family and a family unit and the school and the independence? And these are really the questions that the functionality that comes about for parents as opposed to just the medical tag.

Dr. John Lantos

Did you have any concerns about putting your story out there as a doctor and knowing that maybe parents in the NICU would read about your own personal experiences and think of you differently?

Dr. Annie Janvier

Well, that's why I didn't put just, I thought it was unfair to put just my story because I don't want parents to think, oh, this is how I need to act to be a good parent because she's a doctor and she did this. Well, and my husband is also a neonatologist, so imagine, like, this is what you need to do. So I thought it was important to put other stories, for example, the story of Gabrielle and Ehud and a lot of other stories that finish differently, to balance just my story. What I found is interesting. Yes, I thought about that, because it doesn't portray me always in a... in a very good light, or even as a mother. And for my daughter, too, I didn't want people at school to know all these things necessarily, so I waited for her to be older and to understand the book was coming out. What I've realized is that for some people it increased my credibility, and for many it decreased it. So I'm now seen by... a lot of, I'll say, pessimistic researchers as a very biased researcher who, because I had a premature daughter, I'm unable to do unbiased research and to interpret it in an unbiased fashion. So it has both helped and, I guess, perhaps harmed my reputation.

Dr. John Lantos

Have you read the book to Violette?

Dr. Annie Janvier

Yeah, Violette actually read the book. At first I told her about the book when it came out. She was too young to read it on her own. She has reread it since then. So when she read it on her own, she was 13. And I remember her saying, oh, geez, mom, this is intense. And I'm like, okay, yeah. And what do you find intense about it? said, well, at least I know that I'm living at the end, so there's no surprises for me, but imagine for others who read it.

Dr. Annie Janvier

But she had heard about it before, because we had questions about stopping the respirator, withdrawing the respirator, and taking very hard decisions. And inside there, I... I say I don't love her at first, and I don't enjoy being in the unit and holding her. But she knows I love her unconditionally now. But she, I mean, it was important to speak about it, too, before she read it.

Dr. John Lantos

And that seems to be one of the main take-home messages of the book, that you go through a roller coaster of difficult emotions when you have a critically ill baby in the NICU, but they pass, and doesn't mean you're a bad parent.

Dr. Annie Janvier

Yeah, you're right. But it's very hard to realize that when you are a parent in the NICU. And we can make it much harder as neonatologists of pointing out, oh, there's always a risk and there's a risk. And, oh, your baby's fine today, but he can still be septic tomorrow. And we don't necessarily validate emotions. of it's normal to feel crazy. Some parents feel crazy. You won't always feel disoriented like you do now, for example. And our rigid care models can sometimes inadvertently harm parents. For example, a nurse who says, oh, you'll take Violette in skin testing. You'll love it. It'll be so great. Parents, they just find this is the best moment of their life. Then you hold her and you're like, geez, I hate this. I wish I wasn't here. I don't feel like a parent. Why don't I feel like this? So the whole world of, for example, the new parent integrated care can harm parents. I didn't want to present my daughter on rounds. I actually know how to present on rounds. I'm a neonatologist. I didn't want to give ash feed to her. I know how to insert the tube. I'm a neonatologist, but I didn't feel that as a parent that was something I should do. But now we kind of format parents into knowing about CO2s and weight gain and empowering them to present their kid and be there at resuscitations. And not all parents want to do that. A lot of them want to, but it's... I think these rigid care models probably make many parents disappear. Like I did. I disappeared. I just showed up at change of shift for the first month of my daughter's life because I was afraid to be asked to do yet another thing I didn't want to do or be told that parents love to do whatever I didn't want to do.

Dr. John Lantos

So is that the main take-home message here for doctors and nurses? Don't try to put parents in a box. Let them tell you what they need.

Dr. Annie Janvier

Well, that's one of the take-home messages. Parents are all different. And the sentence, some parents, other parents, is very important. Like some parents want a lot of information and others just want to know, you know, the crude numbers of the day. And if this is normal for a 26-weeker, what kind of parent are you? Listening to parents, acknowledging emotions too, and validating them.

Dr. John Lantos

So

Dr. Annie Janvier

important. And I think for clinicians, empowering parents is, into what they can do and how they can reorganize their routine to what they can control and what they can't control. And I think that was the most important thing as a parent. Perhaps parents want to know all the facts because they feel they can control something, but the facts don't help you control if your baby will have a high CO2 or not. But you're able to control if you're there, if you pump your milk, if you sing to your kid, if you change the diaper. when you go home, how you can have coping mechanisms that are healthy for you. There's a lot of things you can control, and I think empowering parents and recognizing they're strong, validating their emotions, and making them realize what they can control can be very beneficial.

Dr. John Lantos

Well, thanks for those lessons, and thanks for writing the book. The book is called Breathe, Baby, Breathe. It's published by University of Toronto. and we've been talking with Dr. Annie Janvier, a neonatologist, clinical ethicist, author, and mother at the University of Montreal and Hôpital Saint-Justine in Montreal. Annie, thanks so much for talking to us today.

Dr. Annie Janvier

Thank you, John. Thanks for having me.

Dr. John Lantos

This is John Lantos from the Pediatric Ethics Podcast coming to you from Children's Mercy Hospital in Kansas City, Missouri. and the Children's Mercy Bioethics Center. Thanks for listening.