Hello friends 👋
In this episode of The Incubator Podcast, Ben and Daphna host Fabiana Bacchini, Executive Director of the Canadian Premature Babies Foundation (CPBF) and author of From Surviving to Thriving: A Mother's Journey Through Infertility, Loss, and Miracles. Fabiana shares her deeply personal journey of becoming an advocate for premature babies and their families after spending five months in the NICU with her son, Gabriel. Her transformative experience with family-integrated care inspired her mission to ensure parents are empowered to play an active role in their baby’s care.
Fabiana highlights the vital importance of parent involvement in the NICU, discussing how the CPBF provides education, support, and advocacy for families. She shares the foundation's initiatives, including their global educational platform, "Preemie Chats," and the recent launch of a research engagement platform to connect parents and researchers.
The conversation delves into the cultural and systemic challenges of engaging parents, from NICU policies labeling parents as visitors to addressing barriers like parental leave. Fabiana passionately advocates for recognizing parents as partners in care, emphasizing that empowering families not only benefits babies’ outcomes but also strengthens long-term parental confidence.
This episode is a must-listen for anyone committed to improving neonatal care, as Fabiana’s insights and advocacy provide an inspiring call to action.
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Short Bio: Fabiana is the Executive Director of the Canadian Premature Babies Foundation and the author of "From Surviving to Thriving, a Mother's Journey Through Infertility, Loss and Miracles." As a parent of a preterm baby, she participated in the study of Family Integrated Care (FiCare), which inspired her to become a passionate advocate for premature babies and their families. Fabiana serves as an advisor on numerous committees, including the National Steering Committee for FiCare, the European Foundation for the Care of the Newborn Infant (EFCNI), and the Canadian Preterm Birth Network (CPTBN), and is dedicated to ensuring that the perspectives of parents are integrated into research and care practices for preterm infants.
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The transcript of today's episode can be found below 👇
Ben Courchia MD (00:00.952)
Hello everybody. Welcome back to the incubator podcast. It is Sunday. We are back with another interview for you this morning. Daphna, how are you feeling today?
Daphna Barbeau (00:10.35)
I'm doing great. I always say that, but I love interview day, so I'm always great on interview day. And we are very excited about the guest we have on today. I also feel like I always say that, but I think we're going to learn a lot today. So I'm looking forward to that.
Ben Courchia MD (00:24.472)
Absolutely, absolutely. I mean, this is another example of us really being or at least listening actively to the community. So today we have the pleasure of having on with us Fabiana Bacchini, who is a guest that was recommended to us by a former guest of the podcast, Dr. Paige Church, who after we recorded with her, she said, you got to talk to Fabiana. And so.
Daphna Barbeau (00:44.238)
Mm -mm.
Ben Courchia MD (00:48.888)
I'm very happy that we are here today and that we are able to record and we wanted to give a shout out to Dr. Church for helping us making this happen. Fabiana, good morning and thank you for being on with us.
Fabiana Bacchini (01:02.831)
Good morning, thank you so much for having me.
Ben Courchia MD (01:05.592)
No, it's our pleasure. For the people who are not familiar with your work, you are the executive director of the Canadian Premature Babies Foundation, and you are the author of the book From Surviving to Thriving, A Mother's Journey Through Infertility, Loss, and Miracles. As a parent of a preterm baby yourself, you participated in the study of family integrated care, which inspired you to become a passionate advocate for premature babies and their families.
You serve as an advisor on numerous committees, including the National Steering Committee for Family Integrated Care, the European Foundation for the Care of the Newborn Infant, and the Canadian Preterm Birth Network. You are dedicated to ensuring that the perspective of parents are integrated into research and care practices for preterm infants. So without...
further ado, I guess I wanted to know a little bit about your background and really what led you to spearhead the Canadian Premature Baby Foundation.
Fabiana Bacchini (02:14.671)
Yes, so my, it was really my experience being in the ICU for five months with my son Gabriel. I was never an advocate. I was never the voice of anything but myself. I was, my background is a journalist. I always love to report stories, tell stories, but I never saw myself as an, become an advocate for anything. But when I found myself in the ICU,
with my son for five months. As you mentioned, I was part of the family integrated care research study. And it was a very transforming experience for me the way I saw my own experience of the ICU and how I saw the ICU. When I left the unit and I decided to volunteer the hospital and I realized that mode of care wasn't...
a regular mode of care, not all parents were involved in the care of their babies around the world. And that became my motivation to make sure parents were involved in the care of their babies. And then I see you and I joined the steering committee for a family integrated care, if I care, at Mount Sinai Hospital in Toronto, and also the international steering committee. And that led me to the foundation. I didn't.
started the foundation. The foundation was already in existence in Canada. So I took over six years ago as executive director and became my absolute passion because now I can take the work that I did in one hospital in a few units I've advocated for family integrity care and now I do a much broader work across Canada.
and we do a lot of collaborations with international organizations, international research studies. So that was my beginning of becoming an advocate, really. But it was that experience at the NICU that really prompted me to become the voice of those who didn't have a voice or didn't have English as a first language like myself, but wouldn't speak English at all. And I thought, OK, I can do it, so I have to do it.
Ben Courchia MD (04:19.736)
Mm.
Ben Courchia MD (04:29.08)
It's a very interesting inception story. It resonates with me a lot because I feel like I'm a bit like you. I stay in my corner. I don't want to be advocating and I feel very uncomfortable in this position. It's very stressful for me. I'm wondering, as you are experiencing the NICU, what is the situation that really makes you rethink your stance and say, I have to advocate for people in the NICU? And my second question is,
Did you feel that you needed to advocate for the babies, for their families, or for both?
Fabiana Bacchini (05:02.351)
Well, I tell you one thing that happened that made me want to do this work. So when I was part of the FICARE study, we had education sessions every single day in the hospital. And...
I never want to know anything about medical things because it's not my background. I never like to go to the hospitals. That was my background. I did infertility treatments. I could not even inject the injections myself. I had to go someplace. That's how I didn't like this field at all. But being at Sinai with Gabriel and in the beginning, I didn't want to know anything about his condition because I was so scared of getting bad news.
So I shut down for the first few weeks until a really nice doctor came to explain to me as it was a kindergarten teacher what was happening to my sons. And the example was the PGA. But from that lesson, I start getting more interested in learning what was happening to Gabriel. And through the education sessions, I learned more and more about the NICU, the medication, the fortification, my breast milk.
why my breast milk was so important, why it was so important to do skin to skin with Gabriel. So many learnings from, but very small dose of learning every day. And before we left, we had to do CPR course. And it was that one course that I was actually joking with the nurse and the nurse said, wow, if you...
you know, you might need CPR. I said, well, I would never do CPR on my son. I would call 911 if I need their home and all that. Well, six weeks after Gabriel got discharged from the NICU, he still came home on oxygen and he was not doing well. I took him to his pediatrician who worked in a community hospital and Gabriel got admitted with aspiration pneumonia.
Daphna Barbeau (06:51.886)
Thank you.
Fabiana Bacchini (07:04.975)
So we were there for a week and Gabriel was not getting better. And until one morning I was breastfeeding Gabriel and he started turning blue. And I remember the nurse who gave me the CPR course said, listen, in my ear saying to me, when you don't know what to do, start CPR. Right? And I yell, nobody came to rescue Gabriel. And I put him on the bed and I started doing CPR on my son inside the community hospital.
Ben Courchia MD (07:14.472)
my God.
Daphna Barbeau (07:14.926)
Well...
Daphna Barbeau (07:24.814)
Hmm.
Daphna Barbeau (07:33.486)
Well.
Fabiana Bacchini (07:34.063)
And I don't know, I had that insight. I look around the room and there was a cold blue button. I pressed, everybody came to rescue Gabriel. And I had to advocate for nine hours to get my son transferred to a level three hospital that had all the support for him. And that was Christmas Eve. And his first Christmas that we're not planning to be in a hospital in the ICU.
Daphna Barbeau (07:54.286)
Mm.
Fabiana Bacchini (08:00.879)
Gabriel was back on CPAP and NG tube and there are so many memories from the NICU. But you know, it was that one event that I felt so much gratitude that I had the skills, the knowledge, and I was ready to save my son's life. I think from that moment is when I made the commitment that I was going to give back to this community because I had that gratitude in my heart that.
Ben Courchia MD (08:17.816)
Mm -hmm.
Ben Courchia MD (08:22.04)
Wow.
Fabiana Bacchini (08:30.479)
If it wasn't for what I had learned in the hospital, I would have lost my baby that day. So when I came back to the hospital to volunteer and I realized the FICARE wasn't a standard of care, the parents did not have education and they were not at the bedside welcoming their parent partners in care. And I said, what if that happened to a mom who is not in the NICU? Who?
Daphna Barbeau (08:36.75)
Well...
Daphna Barbeau (08:57.934)
Hmm.
Fabiana Bacchini (08:58.703)
didn't spend time with the baby who did not understand how to recognize their baby's needs. So I think that event was the event that really changed everything for me that I decide, yes, I have to advocate for families to be at the bedside, to bring our voice to care, to networks, to research, to anywhere we can actually talk about our experience as parents and how important it is for us to be.
part of care of our babies because our time in the ICU is limited. But then you have a whole life with your baby at home and you have to know how to care for that child.
Daphna Barbeau (09:34.446)
Hmm.
Daphna Barbeau (09:41.054)
I really appreciate you sharing that. I have chills just hearing that that part of your story actually a part of your story that I didn't know and I have so many more questions. I've so there's so much to unpack there. I was struck by something you said early on because you're a bright well -educated, you know, doer and you said something that you know the literature is pretty clear about.
that parents are worried or uncomfortable about getting into the quote unquote medical things. And I'm struck that if it affected so much somebody like you, I think really our population will really struggle to engage with that part of their baby's care. And I'm wondering.
What could somebody have done maybe earlier in your admission to empower you on that part of his care? I think we struggled to do that and we're still not good at helping parents engage on that part of the care. Should we not focus on that part at all? Could we have done things differently? What do you think?
Fabiana Bacchini (10:57.007)
there's also a lot to unpack on your comment. And I share a little bit of my experience of going around the world and talking about family engagement and then I see you. So from my own experience, first of all, I come from a culture where we don't, I'm from Brazil originally. And in Brazil, at least growing up, you never really,
Daphna Barbeau (10:59.598)
You
Fabiana Bacchini (11:22.543)
not question the doctors, but whatever the doctors and the team says, it is what it is, right? There's no, you accept what is, there's no engagement, there's no conversation. So that's how I was brought up. Okay. So I don't know if the care change in Brazil, I've been out of my account for 25 years. So I hope it has, but that was my, my idea of, okay, if I'm in the medical system, whatever they say is right. I could never ask questions or be involved by any means.
Daphna Barbeau (11:27.982)
Mm -hmm.
Fabiana Bacchini (11:52.527)
So that's how I came into the ICU.
Daphna Barbeau (11:55.15)
And I think that's true for a lot of cultures and societies. So yeah, I'm sure a lot of people, you know, experience that. Yeah.
Fabiana Bacchini (12:01.871)
Yes, so I came in with that, but it is the role, it was for me the role of the nurses to involve me first in the care, even before I signed up for being part of the study. Okay, our nurses, okay, you can change your baby's diaper. I was like, can I touch a baby who is 900 grams, two pounds, right, with a ventilator, all these wires? I
Daphna Barbeau (12:15.118)
Mm.
Fabiana Bacchini (12:29.519)
was so scared of even touching him. So they taught me how to touch him and how to change his diaper and how to take his temperature from day one. And I think that is the beginning of empowering a parent to be a parent, because you don't know you can be a parent, right? As you see, everybody's taking care of your baby but you. So what is my role? To sit and watch? So it is the team has to be proactive in, OK, no, you can't. You can't hold your baby. You can't.
touch your baby, if your baby is too sick to do skin to skin, you can put your hand on your baby, you can talk to your baby, you can read, you can sing songs, you can do things. But it has to come from the team because you don't know and you don't want to hurt your baby. So and then think about different backgrounds. As you mentioned, I'm educated. Yes, it's all that. And we have always had these conversations. But parent is a parent.
Daphna Barbeau (13:12.206)
Mm.
Daphna Barbeau (13:26.062)
Hmm.
Fabiana Bacchini (13:27.214)
Whether I went to Bogota and I saw moms who are 13 years old, and then I see you holding their babies skin to skin. And that for me was incredible. It was a very low income area in Bogota. It was not a private hospital. It was a public hospital. And I saw that happening. In a level three NICU there, they didn't even have
Daphna Barbeau (13:33.486)
Mm -hmm.
Daphna Barbeau (13:44.558)
Sure.
Fabiana Bacchini (13:55.727)
chairs by the bedside, but as soon as the babies move into the level two, all the moms are there. And I mean, there's a lot of work to do all around the world, but I think a mom is a mom, right? Whether the mom has an education or doesn't have an education, the parent will be a parent. And I think that is what the team has to come forward and say, yes, you are a parent. You have a place in this strange environment.
Daphna Barbeau (14:01.198)
Mm -hmm.
Fabiana Bacchini (14:21.967)
Same thing, I went to Brazil last year for a conference and I was talking about family integrated care with Dr. Carol Bryan, who is the lead of FICARE. And we are talking about this mode of care in Canada and how would that work in a low income setting in public hospitals where the parents cannot be there or not there or parents who use drugs and they don't understand the concept of being a parent. But then you think about...
Daphna Barbeau (14:42.798)
Mm -hmm.
Fabiana Bacchini (14:50.863)
Two things, one, the parents who are homeless moms are in drugs is a very different population and is a very small population. So you're still in Canada, you have ways of integrating moms who are drug users and have all the sleep console. I forgot what it is that is happening. Thank you.
Daphna Barbeau (15:15.278)
Eat Sleep Console. Yeah, Eat Sleep Console.
Fabiana Bacchini (15:18.671)
So there are ways of engaging those families. And what I saw in Brazil was like, yes, I think family integrated care would work better in low income studies where the parents, where there's less resources than ICU, there's less nurses per baby. So parents could be there supporting, caring for their baby and being part of the team. I don't see as a barrier. I see as an opportunity to engage more parents, but it's up to...
Daphna Barbeau (15:21.902)
Sure.
Daphna Barbeau (15:30.606)
Hmm.
Daphna Barbeau (15:37.422)
Mm -hmm.
Fabiana Bacchini (15:47.535)
the culture of the ICU to want to engage the parents and bring the parents to the care of their babies.
Daphna Barbeau (15:55.022)
And actually you were highlighting some of the things that parents have the opportunity to do in the NICU. And I recognize that actually if the parent doesn't do those things, the baby may not have access to those things whatsoever. So, I mean, truthfully, the parents have a absolutely crucial role in the baby's care. What is the best way you think for us to...
to sell that to parents. You know, I think sometimes we say that to parents and they don't believe us. But what a parent can offer to their baby in the NICU is different than any other member of the team.
Fabiana Bacchini (16:36.111)
don't think is that what is necessary to say to parents, but is how to embrace the parent. If the unit has the culture of embracing parents and parents and its partners in care, why a parent wouldn't want to be there is an expectation that yes, the parent is the parent. You are just in this temporary place caring for your baby with you.
Daphna Barbeau (16:54.094)
Mm -hmm.
Mm -hmm.
Fabiana Bacchini (17:04.175)
And I think, and then you can tell me all the barriers that exist for the parents to be there. You know, you have other children at home, you live far away from the hospital. You have to move from your community. There is a rural area to the big center. So how can we mitigate those barriers and really bring parents into the care of the babies? Like in Canada, we are very fortunate. We have a parental leave for a year. US.
doesn't, you know, other countries, like you see the Scandinavian country, they have two years of parental leave, parents move inside the ICU, different settings, but I think that's why we have to come together as a community. Yet it is very important for parents to be there. How can we meet, how can you break those barriers there? Not because the parent doesn't want to be there, because maybe there is no care at home, that maybe they live too far away, there is no Ronald McDonald's behind every single hospital.
Ben Courchia MD (18:02.456)
Mm -hmm.
Fabiana Bacchini (18:03.567)
or because there is no parental leave and the parent needs to work. So I think those barriers have to be taken care of by our systems so the parents can be there because we look at the long -term outcomes for those babies. We know the long -term outcomes of babies on skin -to -skin is like the research is showing that there's benefits when the child is 18 years old now. So why are you not...
Daphna Barbeau (18:30.734)
Mm -hmm. Mm -hmm.
Fabiana Bacchini (18:32.527)
caring for those babies the best we can for four or five months during the NICU stay. I mean, and if you look from the government perspective, the system perspective, it's cheaper to the system too, to have the parents there. But this is another conversation that is very hard for parents to know that a lot of decisions are made on how much it costs.
Daphna Barbeau (18:39.054)
Absolutely, absolutely.
Daphna Barbeau (18:46.926)
Mm -hmm.
I'm going to go to bed.
Ben Courchia MD (18:50.584)
Absolutely.
Daphna Barbeau (18:59.438)
Yeah, yeah, you're absolutely right. And you touched on a lot of things, which I think we will ask you specifically about that the organization is doing for parents of premature babies in Canada. I wanted to ask one more question about kind of your story that you mentioned. You know, I think a lot of people worry about including parents.
after discharge in research or in their units and will we add more stress to parents? But you actually, I think indicated that it was kind of transformative for you. And I wonder that with our fear about including parents sometimes that we're missing an opportunity that is potentially pretty therapeutic for families. I wonder what you think about that.
Fabiana Bacchini (19:51.183)
Yes, it's funny that you said that because a lot of time I go to do a talk and some people say to Dr. O 'Brien because I usually go to this conference with her to talk about Feminine Integrity Care and they said to her, not all the parents will be like Fabiana who is going to do all this work and it's true but a lot of us want to, right? And maybe not to become, not to run a
Daphna Barbeau (20:15.886)
Yeah.
Fabiana Bacchini (20:20.591)
organization necessarily, but a lot of parents want to do peer to peer support. They want to be an advisor and then I see you. And why not having an invitation, an open invitation? You're welcome back into the unit. Obviously, that parent has to be ready because you're going back into the place.
Ben Courchia MD (20:35.832)
Thank you.
Fabiana Bacchini (20:42.511)
where the trauma happens. And we see, I saw parents who couldn't even wash their hands with the soap in the hospital because it was so traumatic and brought back those memories. So the parents have to be ready. They have to tell their stories in a way that is, okay, I can't tell my story and is a therapeutic way of telling my story. And you obviously are also not going to go back to the hospital if it is a painful memory or if you can cope.
by being there. So I think there's parents and parents who have parents have to understand when they are ready. That's why there are trainings around bringing parents back into the ICU. Our recommendations and organizations at least a year out of the NICU to be able to come back and volunteer and do any work. Because we feel we need at least a year to process what happened.
Be with the baby, be with your baby, make sense of life for a year, and then let's talk after a year if you're ready. And also the unit has to be ready to bring us back. Because you're bringing back in a different role, but it has to be a trauma -informed care, the way you bring those parents back, the way you follow up with them after an advisory meeting, for example. I always say, OK, after.
Ben Courchia MD (21:47.96)
Mm -hmm.
Daphna Barbeau (21:52.142)
Mm -hmm.
Fabiana Bacchini (22:03.503)
the day after you come to a meeting in the hospital to sit on a committee or to participate in a QI project, call the parent back. See how they're doing. And I think that is very important. But it's always an invitation. We have a chance to engage in research, to become a peer parent, to be an advisor. Would you like to do that?
Daphna Barbeau (22:13.87)
I love that.
Fabiana Bacchini (22:29.679)
And I think those are the relationships you build while the parent is still in the ICU that you know maybe one day you can call the parent and say, okay, you have an opportunity to participate in an event or to speak at a foundation event, a hospital foundation event. And then you bring the parent back slowly. You're not going to obviously overwhelm the parent and have the parents doing so many things, but I think.
Ben Courchia MD (22:29.976)
Mm -hmm.
Fabiana Bacchini (22:55.823)
slowly and more like myself, I start very small in the hospital until I start getting involved in everything and I almost had a full -time volunteer position in the unit because I just loved being there and for me, yes, it was very, it helped me to make sense of my journey and why all that had happened for me and it was my way to really find more meaning in my life.
I think my job now is extremely fulfilling. Every single day I love what I do. And it was really life changing for me in every single way that I could possibly imagine that such an experience would change my life.
Ben Courchia MD (23:44.376)
I think this is a great segue to talk a little bit more about the Canadian Premature Babies Foundation, which again, you can access at cpbf-fbpc.org. We'll put the link in the description of the episode. But I think it would be interesting for us to find out a little bit more in details of... You've mentioned...
I guess through the questions we've asked you so far, you've mentioned, I think, the big pillars of what the foundation stands on, whether it is support, education, advocacy, or research. I just would like to know if there's anything else that you would like to mention about the foundation that you guys do that people should be aware of. And if not, then can you then tell us a little bit about some of the things that you're the most proud of in terms of what you've been able to achieve through this medium?
Fabiana Bacchini (24:40.111)
So I cannot take credit for the whole foundation because I didn't start the foundation. It was actually a mom of twins from Alberta who started CPBF. And CPBF was really founded on the pillars of FICARE, which you can really see clear in our areas of work that you mentioned.
So I've been with the foundation for six years now. And I think what I'm most proud of the foundation is the reach that we have not only with parents, but also with healthcare providers. Our education sessions that we have live every single Friday, the Preemie Chats, it became a global audience. And we started during COVID to answer questions that from parents ask about COVID, about...
breastfeeding during COVID and how they could protect their babies at home. And from there, it became this massive educational platform that we have an audience in 150 countries. We have over 300 live sessions. And so that became for us like a very proud education piece because not only we educate families, but we also providing education.
to health care providers from the parent perspective and what is important to us. And recently I was in a conference in Germany and people told me from many countries in Africa or South America how they use our sessions to educate the health care providers. And that for me was a moment of pride because you don't start something to have that broad audience.
Ben Courchia MD (26:22.424)
So cool. Yeah.
Fabiana Bacchini (26:29.615)
And also you don't know the reach that you're going to have when you launch such a thing online and for free. So that it was a, it is a great program that we have. I hope we can continue 2025. But the other thing that I'm really passionate about is engagement in research. CPBF does a lot of collaboration with researchers from around the world. And that for me is being part of the solution.
You know, because it's very nice for us to provide support groups, mental health support for families. But I feel working researchers is being part of the solution. It's, okay, how can we do it together to improve the outcomes? So there is less, hopefully less preterm birth around the world or less morbidities in the babies who does survive the NICU.
So I think those are the programs that I'm very proud of. We just launched a platform to connect researchers with parents. So we are building this platform. It's on Redcap. So researchers can go there and request our support. But we also building a database of parents who wants to be involved in research. So those are the two things that are very important.
Ben Courchia MD (27:47.48)
How do you guys navigate? Yeah. I was going to ask, I mean, you started off as a Canadian, you're a Canadian organization, but I think the problems you face in Canada are very specific. And as you mentioned, you're seeing that the education you provide, the opportunities you provide for advocacy for parents really touch a global audience. And I think I'm just curious as to how do you guys are, how are you guys able to...
continue to grow and try to answer the need of the global community, especially when the needs start becoming very diverse, where the needs of the Canadian mother or father are very different from what somebody might experience in a different country. How do you guys navigate that? Because I know it's not easy.
Fabiana Bacchini (28:34.863)
No, but our goal, everything that we do is for the Canadian parents and the Canadian system. This is our, we only focus on, everything that we create is focused on in Canada. It happens that all the countries want to use our materials. Like we create all these infographics. They're very easy to understand, very broad, high level education on skin to skin, for example, or how to comfort your baby through a painful procedure. It's...
Ben Courchia MD (28:40.056)
I see.
Ben Courchia MD (28:47.384)
I see. I see.
Fabiana Bacchini (29:04.719)
and is information that you can use in any NICU. But obviously we created two Canadian parents and two Canadian healthcare providers because we are very aware of how we use the language in Canada, right? In some countries, it might not be aware of, you know, the pronouns or when you talk about human milk instead of breast milk, some countries are still not aware of that. So what you create, you create for the Canadian context.
Ben Courchia MD (29:12.216)
I see.
Daphna Barbeau (29:31.406)
Mm -hmm.
Fabiana Bacchini (29:34.415)
But it seems that we are providing some education worldwide on a few things when you create materials for Indigenous families. It is for Indigenous families that live in Canada. So that is our main audience.
Ben Courchia MD (29:34.968)
Yeah, and I -
Daphna Barbeau (29:48.686)
But I was going to say, I can certainly see why other people are drawn to your website, to your presence on social media, because for people who haven't been able to look at those things, you've got a very active community, very present. And just like you said, the educational information, they're like one pagers for families that cover.
I mean, you guys have such an extensive library that people can go and print information. And so I can see why that's so valuable for people all over the world.
Ben Courchia MD (30:27.48)
Yeah, and these one -pagers are quite excellent. I mean, they touch on topics, I think, that are very relevant to parents. Number one. Number two, they're very well done. I think, like you said, they're something that I would have no problem printing and handing out to parents in our unit. And they address concerns of parents. So I think, for example, I mean, I don't know, the one that I looked at was language development. And you do make sure to touch on, number one,
Daphna Barbeau (30:37.326)
Mm -hmm.
Daphna Barbeau (30:42.67)
Right? Exactly.
Ben Courchia MD (30:53.848)
the language development in the NICU, but also post -NICU. And I think that's something that parents are concerned about. So I am not surprised that this resonates with so many people. The one -pager on our OP is phenomenal. And so I think this educational content really resonates with, I guess, the work we're trying to do here as well. And the videos that you mentioned, I mean, it's kind of funny to us because we do see.
a lot of friendly faces who are there as well, whether it is Michael Narvey, Betsy Pilon, and so on. So very high quality content. So I think it's something that everybody should be checking out. Daphna, did you want to have... Go ahead.
Daphna Barbeau (31:20.686)
Mm -hmm.
Daphna Barbeau (31:38.254)
Yeah, you briefly touched on it. I'd love to hear more about some of the advocacy campaigns that again, I think will reach people far and wide. But the ones I was hoping to highlight are certainly the zero separation campaign. And then you touched on it briefly. It's something we struggle here, but supporting families through kind of government policy is so like parental leave, things like that. We're here in the States.
still so far behind what you guys are offering to parents in Canada. So we have a lot to learn from you.
Fabiana Bacchini (32:17.519)
Well, but you have the Family Center Care Task Force in the US now that is a great group and a great advocacy that I'm sure you guys are going to go far with that project because I truly believe in the work that is happening there and the advocacy piece. I do hope everyone in the US do have an extended parental leave. I think that's my hope for the US, number one thing.
Daphna Barbeau (32:21.326)
We do. Growing. Yeah.
Ben Courchia MD (32:21.72)
That's true.
Fabiana Bacchini (32:45.167)
But for us, we always at CPBF advocated for parental engagement in the NICU. With COVID, it came the global campaign Zero Separation. It wasn't initiated by CPBF, it was initiated by the EFCNI, the European Foundation for the Care of Newborn Infants. And it was a global campaign worldwide. And there was a survey going around the world to see what was happening.
in the NICUs in many countries because we know the restrictions happen worldwide and parents were seeing again as visitors. It took us back 30 years ago when parents were not coming to the NICU. So it was a global campaign. But from that global campaign, we in Canada created a call to action with the FICARE committee and we disseminated NICUs across Canada.
And I worked really closely with Dr. Marsha Campbell‑Yeo, who is a researcher from IWK in Halifax, and we work on the presence study. So, and the presence study has everything to do with zero separation campaign, because we are really to understand what was happening then I see use during COVID, during the pandemic.
and was surveys that was distributed across the country for leadership, health care providers, and parents, so three different surveys. And we work with a multidisciplinary team on the research group from infections control people to parents, obviously, NICU nurses, physicians. And it was all based on values and preference of families. And we came up with 13 recommendations.
to really keep the parents and babies together during a pandemic, informing if there is a new pandemic so we don't do exactly what we did with COVID, shut the doors. And now the advocacy is really to change hospital policies. How the policies see parents, right? If parents in the hospital policy is seen as visitor, we have a problem. Because if there is any other...
Daphna Barbeau (35:00.43)
Totally agree.
Fabiana Bacchini (35:02.127)
or the pandemic or currently, you know, there's two restrictions, it's going to happen exactly the same. So if parents are in the hospital policy, well, parents can visit from nine to five, we have a problem. Because parents would have been a separate policy in the manual of the hospital or the NICU. Parents are separate category. Parents are parents, and the family has to decide who the parents are, two moms.
Ben Courchia MD (35:17.304)
Ha ha ha ha ha ha.
Daphna Barbeau (35:31.342)
Mm -hmm.
Fabiana Bacchini (35:31.567)
to dads, mom and mother.
Ben Courchia MD (35:33.976)
Yeah, they are providers slash staff members, you know?
Fabiana Bacchini (35:38.671)
Yes, so why are parents in the category of visitors? Visitor is the aunt, visitor is the neighbor, visitor is the cousin who lives, you know, a thousand kilometers away and comes to see you once a year. Those are visitors. So the parents have to be separate. And I think that is the advocacy that I get very passionate about because to this day, I don't understand why parents are called visitors and we are not visitors.
Daphna Barbeau (36:05.646)
Mm -hmm.
Fabiana Bacchini (36:08.271)
My parents are parents and then I see you. It happens that we deliver earlier, you cannot bring the baby home. So we are using your hospital, your unit, you're taking care of our baby and we are taking care of the baby together. And I think that is a big piece of that. You know, if I, if I do nothing else in my life, I will keep talking about this until I die because the parents are parents and I, and I feel the hospital does not own the baby.
When you say, it's my baby, we are protecting the baby. The hospital doesn't own the baby. The parents is the parent's baby. We are just in your space for a limited period of time. And we are grateful for the care, for saving our baby's lives, for saving our lives as parents. But.
Daphna Barbeau (36:38.126)
Mmm.
Daphna Barbeau (36:47.182)
Mm -hmm.
Mm -hmm.
Fabiana Bacchini (37:03.471)
we cannot be seen as visitors. And I think that what comes from the Zero Separation Campaign, it comes from the Recommendations to the Present Study, and comes from Family Integrated Care. Like we are there as parents, teach us, work together, because we are taking this baby home for the rest of our lives, right? When I look at my son today, 12 years later, you know, I have to know what's happening to him.
Daphna Barbeau (37:21.134)
Mm -hmm. Mm -hmm.
Fabiana Bacchini (37:31.215)
12 years later, right? He has quadriplegia cerebral palsy. He has a lot of health complications. He had BPD. So you know, BPD happens to the babies long -term. And I'm taking care of him. And I'm still using all that knowledge from the NICU 12 years later. So I think that is the shift that has to happen in people's minds, in the culture of...
our health care system, in our NICUs, and even the health care providers. Because sometimes the parent comes and the nurse says, he's my baby today. Not your baby, it's my baby, and we are working together.
Daphna Barbeau (38:12.877)
Mm -hmm.
Ben Courchia MD (38:18.84)
Ha ha ha.
Fabiana Bacchini (38:19.311)
That is my passion. You touch my...
Daphna Barbeau (38:19.534)
Yeah, I... Well, I think that's great. I think if people don't take anything away from our talk today, it's just not to use that word, visitor. Parents is visitors, right? Parents are not visitors. I love that.
Ben Courchia MD (38:32.44)
Parents are not visitors. I'm writing this down actually, yeah?
Fabiana Bacchini (38:35.599)
Okay, Ben, I'm going to check your unit in a few months.
Ben Courchia MD (38:39.672)
Well, well, just so you know, I mean, you know that I work with Daphna, who is very active on the family centered care task force. So we have phenomenal visitation policies for our babies. Parents are allowed 24 seven extended family members are allowed at the bedside. So siblings. So I am I have nothing to fear as long as Daphna continues to advocate for families.
Daphna Barbeau (38:50.222)
Hehehehe
Daphna Barbeau (38:55.31)
Siblings.
Daphna Barbeau (39:00.366)
We'll see.
Fabiana Bacchini (39:04.815)
Wonderful.
Daphna Barbeau (39:05.261)
Well, thank you for sharing that. I think that's great. I know exactly what clip we're going to put all over so that everybody hears you say that. I think that's awesome. I'm recognizing that we're nearing the end of our time together and we didn't even get to talk about your journalistic approach to being a parent advocate that you have written a book that been mentioned early on.
And I wanted to ask you something specific about your journey. I hope this will be okay with you. I think about this all the time in prenatal consultation, in my work in palliative care. I think everybody recognizes how excruciating being a NICU parent can be at times. How is this compounded by those families that have already been affected by infertility or loss before they even -
they even step foot in the NICU. And you know, the more I look at records, this is a large population of our NICU families. And how, you know, how can we offer the additional support or be sensitive to that part of their journeys?
Fabiana Bacchini (40:21.679)
That's an excellent question. I always believe in communication between the providers and the parents and talk to the parents and analyze and realize where they are at for any conversation. And I think it is a skill as a healthcare provider to develop.
the communication piece on how to communicate with families and ask them questions and just really see where they are at and go to where they are to talk to them about any issue. Because some parents are very private, they don't want to talk about their fertility journey and how they end up there or they might not share they had the previous walls or previous, you know.
Daphna Barbeau (41:06.062)
Sure.
Fabiana Bacchini (41:13.455)
whatever journey they had before coming to the NICU. But I think if you are able to recognize and understand that journey, you are better, you put better supports in place for that family. Because when I came to the NICU, I was very open about the struggles that I had to getting pregnant. Not everybody knew I had lost Gabriel's twin. Back then, we had Gabriel's twin B.
and there was only Twin B. And then one day, a few months into the NICU, a doctor came because he came to give me a follow -up appointment note. And I was so, my God, they think Gabriel's going to make it because he gave me the follow -up appointment. And he also asked me, where is Twin A? He didn't know I had lost Twin A. Was it written on my records? Maybe.
Daphna Barbeau (41:46.318)
Hmm.
Daphna Barbeau (41:53.646)
Mm.
Daphna Barbeau (42:00.654)
Mmm.
Daphna Barbeau (42:04.654)
Mm -hmm.
Fabiana Bacchini (42:12.175)
He didn't read, it's fine. I didn't take as a big problem, but I know it can be a problem for families, right? It is a traumatic event, it's a traumatic experience. But I feel like when you sit down, you spend five minutes talking to the family, understand where they are at, I think that is a great way to support. You will understand that family does need maybe a mental health provider.
Daphna Barbeau (42:14.574)
Okay.
Daphna Barbeau (42:21.486)
Mm -hmm.
Daphna Barbeau (42:39.662)
Hmm.
Fabiana Bacchini (42:39.887)
working with them, whether it's a social worker, a psychologist, a psychotherapist, whatever resource the hospital has for that family. It comes from asking. And I think that's where my journalist background comes to, because it's all about how you ask the questions, questions to ask, how the family behaves when you ask certain questions. You can watch the physiology, right? Is this mom?
Daphna Barbeau (42:58.798)
Mm.
Fabiana Bacchini (43:10.031)
you know, how they react even if it's a non -verbal communication or reaction. And I think that is, it is a skill that some people do, some don't, but I think everyone can develop some of it. And I always believe this should be happening in med school because you're still young, right? And you're still learning how to communicate with your patients. How are you going to break difficult news to your patients?
Daphna Barbeau (43:14.958)
Mm.
Daphna Barbeau (43:30.126)
the
Fabiana Bacchini (43:39.183)
How are you going to have these difficult conversations? How are you going to do share decision? I think it should come. I mean, I'm not a doctor. I never went to med school, but I always believe this should be the basis of your profession. I mean, any profession really, right? Because we all communicate to survive, to live. But I think those you have, and my hats off to all of you because I cannot even imagine what it is giving family.
difficult news, news that are going to change our lives forever. And those moments that you remember every single word you're going to tell us for the rest of our lives. And I remember when Gabriel's diagnosed with cerebral palsy, how the doctor was sitting and talking to me, the words she used, the same thing the doctor who gave him the news that my surviving twin, the twin that I lost twin A, Michael, was not going to leave. I remember those conversations.
Daphna Barbeau (44:20.814)
Thank you.
Fabiana Bacchini (44:38.863)
like you do remember. So if you have the basis, you have the skills on how to talk to the families, you might transform that moment that is so difficult for us into something that is meaningful and is you're going to remember with love and gratitude in your heart, as hard as it is.
Ben Courchia MD (45:02.2)
Wow, that's an amazing standard to aim for us as clinicians. Fabienne, I want to ask you one more question before we part ways. And that is one that looks at the future, what's on the horizon. And so I wanted to know if you could share with us maybe briefly, what are the things you are looking forward to with the CPBF and things you're
Daphna Barbeau (45:07.598)
Yes.
Ben Courchia MD (45:28.984)
currently working on that we can expect in the near future.
Fabiana Bacchini (45:33.903)
Well, there's a lot going on at CPBF, always.
Ben Courchia MD (45:36.376)
I'm sure, I am sure. But I'm saying if there's one or two things that you're really excited about, just I'm trying to get the audience fired up about the work you guys are doing. And so maybe you won't have time to give us an exhaustive list, but the things you're really, really excited about.
Fabiana Bacchini (45:50.639)
No, no, my short list, every NICU in Canada change the policies to see parents as parents and not visitors. And I'm talking about little, small NICUs, small units, level two units that sometimes have six, seven beds or NICUs that are in adult hospitals that they see.
Daphna Barbeau (46:02.126)
Mm -hmm.
Fabiana Bacchini (46:16.559)
families very different than children's hospitals. And this is something that I will continue to work at CPBF. Our team is very, very engaged and committed to that, first and foremost, but also to continue to advocate for parent engagement in the NICU, more skin -to -skin. And those are big advocacy campaigns that we will continue to work and advocate for.
besides the education and the mental health support and all that. But I feel I'm always trying to work on the problem and the root of the problem. And then everything else is like the band -aids that you make feel good and the band -aid looks prettier. But I really want to work in the solution, some of the solution pieces in partnership with all the networks that we have, because we cannot do it alone. You can only do with...
healthcare providers working with us with the networks that we have here in Canada to move forward. Otherwise, you cannot go anywhere alone.
Ben Courchia MD (47:21.624)
Yeah, and we're going back to these to these tenants advocacy, education and support for families. Fabiana, this was an inspiring conversation for us. You really are a huge source of motivation. I think you get us excited to go back in the unit and support families. Thank you for sharing your story, for being so candid and for all the work that you do in Canada. It was it was truly a pleasure. Thank you so much.
Fabiana Bacchini (47:52.015)
Thank you so much for having me.
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