#363 - A Mother, A Nurse, and a Baby Named Caleb – The Human Side of Neonatal Care

Hello friends 👋

In this episode, Ben and Daphna sit down with Cassie Carrigan and Sacha Force to share the story of Cassie’s son, Caleb, and the lessons his short life continues to teach. Cassie, a mother, mental health therapist, and NICU parent, walks us through Caleb’s complex diagnostic journey, multiple surgeries, and ultimately the genetic condition that explained his struggles. She reflects candidly on the emotional toll of repeated bad news, the challenge of decision-making in crisis, and the importance of partnership between parents and medical teams.

Alongside her, Sacha—Caleb’s NICU nurse and now a clinical educator—offers her perspective on building trust with families, balancing medical expertise with empathy, and carrying Caleb’s legacy forward in her teaching of new nurses. Together, Cassie and Sacha describe how their bond has grown into an ongoing collaboration, bringing parents’ voices directly into staff training and helping future NICU teams understand the lasting impact of compassionate care.

This conversation highlights the reality of navigating grief, the role of faith and resilience, and the importance of remembering that every baby—and every family—shapes the professionals who care for them

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

Ben Courchia (00:00.788)

Hello everybody, welcome back to the Incubator podcast. We are back today with a very special interview. Daphna is in the studio with me today. Daphna, how are you this morning?

Daphna Yasova Barbeau, MD (00:12.554)

doing well. I was gonna say, I'm so excited, but I recognize I say that every time we're in the studio, but this, we have struggled to schedule this interview when we have multiple people in an interview and I'm so glad that we're finally able to do this. I think that people are going to learn a lot from our guests today.

Ben Courchia (00:18.475)

Yeah.

Ben Courchia (00:31.902)

I agree we are joined today by two guests. have with us Cassie Carrigan and Sasha Force. Cassie, welcome to the podcast.

Cassie Carrigan (00:44.12)

Thank you. It's great to be here. It's such an honor.

Ben Courchia (00:47.382)

Honor is all ours and Sasha, welcome as well to you.

Sacha Force (00:51.712)

Yeah, thank you. It's so it's definitely a privilege to be here. I have to tell you I'm a little bit of a I'm having a fan moment here because I listened to you a lot. So I'm having a little little fan moment. And I like and I encourage everybody to listen to this so

Ben Courchia (01:00.06)

Hahaha.

Daphna Yasova Barbeau, MD (01:04.163)

We appreciate that.

Ben Courchia (01:05.494)

Ben Courchia (01:09.27)

Thank you. Thank you. Thank you, Sasha. Sasha, are a NICU nurse, you're a clinical educator. And Cassie, are a wife, you're a mother, you're the mother of NICU babies. You're also a DJ. You have a multifaceted personality and activities.

We were very interested in talking to you both because the story of your son Caleb, Cassie, was brought up to us. And really, the first thing we would love to do is to dedicate this podcast to the memory of Caleb and the lives that he has touched. And I think it's really important for us to recognize the babies that we care for, especially when the outcomes are not what we had hoped for.

The aspect of Caleb's story, which I'll let you go into, is the fact that he had a pretty arduous NICU course and stricken by the fact that you were looking for answers as to what was the underlying reason for his symptoms. Can you tell us a little bit about what was that like for you? And can you tell us a little bit about this diagnostic journey?

Cassie Carrigan (02:38.722)

Yes, I would love to share about our son Caleb. During his pregnancy, we were told many things. He had a single umbilical artery. He might have a possible coarctation in his aorta. No one was super worried. They said not a big deal. If he has it, it's an easy fix. And by the time I was about to give birth, they had actually diagnosed him with Down syndrome.

even though we had already had two NIPT negative tests. And so they said, well, maybe not, but we think he might have pyloric stenosis because I had high fluid. We induced and then he did well, I would say for the first 18 hours, just needed a little bit of assistance with oxygen. And then we did confirm that he did have the coarctation. So we were transferred up to Denver. He was born in Colorado Springs. That's where I lived.

Ben Courchia (03:16.95)

Hmm

Cassie Carrigan (03:34.264)

transferred up to Denver, this is where we met Sasha. And she actually received him without me because I had had an emergency C-section because I was hemorrhaging. So they would not let me out of the hospital until the next day. So that was a very difficult thing as a mother, but thankfully Sasha was there and especially given our relationship now, that's a very special bond that we have. And then they quickly also confirmed the next day,

through I think it was this air test that he actually had a pyloric atresia. So full blockage where that small intestine went into the stomach. A couple of days later, he had surgery to fix that. And the surgeon found malrotated intestines as well. At this point, we had already had the microarray test done. Those results came back. That was also negative. So now we have three negative genetics tests.

for him, two in utero, one from his own blood. And then we are, he recovered really well after that first surgery. They were able to extubate him really easily. Again, he just needed a little bit of assistance on oxygen. Things seemed to be going in the correct path that we wanted. We were going to get him.

Ben Courchia (04:57.044)

direction.

Cassie Carrigan (04:59.426)

bigger for heart surgery, get him eating, waiting for his intestines to start working after surgery. And then on about day 12, a different NICU nurse thought, well, maybe he has Marconium stuck in his anus. So she went in to go see, because he still had not had a bowel movement yet, and it only went in one millimeter. And so now we have found another blockage.

that was initially missed because it looked like he had an anus, he had a dimple. So it looked like there was no issue there. So basically his large intestine had stopped growing and didn't connect to his rectum. So this was a devastating blow, obviously as a mother thinking we're headed in the right direction. And now we have this other huge defect in his body. And to have to have another surgery,

where that first surgery they could have tried to correct everything. So he had another surgery. They gave him an ostomy bag and the thought was, know, down the road, we'll get him bigger and try to come back and have another surgery to connect that large intestine. After the second surgery is when he started to not do well. They extubated him, but he didn't make it very long until he needed to be re-intubated. And then at this point, he...

Ben Courchia (06:09.748)

Mm-hmm.

Cassie Carrigan (06:25.218)

develop pulmonary hypertension. And again, this was a mystery because his heart defect, as you all know, should not cause pulmonary hypertension. And so again, everybody's wondering what's going on here. A lot of diagnoses were thrown out throughout this process, whether it was DeGeorge and various other things. And at this point, our neonatologist said, hey, I think you should do this other genetic test.

this whole exome. And as a mother, I did not want to hear that because I'm like, everybody keeps saying something's wrong with my baby. I don't want to hear that. As his mother, he's already had all of these normal genetics tests. And I don't want to do this next genetics test. I didn't even know there was another one. Yeah, go ahead.

Ben Courchia (07:14.894)

Did you feel like it was almost as if you were getting reassurance from life that, the tests are wrong. My baby is actually not as sick as predicted. But then that the medical team was trying to find something and it becomes almost this sort of marital dispute of like, why are you trying to find something when everything else tells you there's nothing wrong? Is that relatively accurate?

Cassie Carrigan (07:42.178)

Yes, definitely accurate because in my mind, we had already done all the testing. He doesn't have any major specific diagnosis that will negatively impact his life, whatever that might look like. And of course, I didn't even want to go down that road. I couldn't even really let myself go there to think that he might have something that might cause his death. And so,

It was out of my own self-protection, most likely, in those moments of not wanting to do that. Of course, in hindsight, it makes so much sense now that I've learned so much. Now he has multiple defects in multiple different systems. And that's obviously a tall-tell sign that something, genetically, is off. And so our doctor, thankfully, she took off her doctor hat and she put on her mom hat. She was a mother.

Ben Courchia (08:15.926)

Mm-hmm.

Cassie Carrigan (08:38.934)

And she said, I want to talk to you as a fellow mom and not as your doctor. And she said, if this was my child, I would do this because I think it's going to give us answers to know how to treat Caleb better. And as soon as she said that, that made all the sense to me. And I said, okay, let's do it. So thankfully we did the test. Fast forward, he just continued to not do well. He was on nitrix at this point.

still intubated in his oxygen levels. He just, they kept dropping from 90s down to 80s, kind of that was the resting place. At this point, we actually transferred hospitals. We are at Rocky Mountain Pediatric Hospital for Children with Sasha, and there is a children's hospital in Denver. We did not have bad care at Rocky Mountains, so this was a really difficult decision as a parent. And...

I just knew as a parent, I couldn't regret anything. I couldn't have these thoughts of what if we would have transferred him. I knew Children's was a research hospital. I had heard that they had this pH team. So I said, let's just do it. Obviously, that was a big decision with a very sick baby. When we arrived there, they did all of their testing. He continued to not do well.

They tried a couple of new medicines. Nothing was really working. At this point, he was like in the seventies, dipping down into the sixties. And the conversation of ECMO came up. And of course, as a parent, I am like, I don't know what this is. And so trying to figure out what that is and if this is something that we want to do, because they were giving us the option. And I kept wanting them to tell me what I should do because I'm like, I don't know. Like if this is going to...

potentially help him and save his life, then yes, I want to do this. And they said, basically it could give us more time to try to figure out what's going on. we had a scary moment in the hallway as we were transferring him down from the NICU to the SICU, because that's where they were going to do ECMO and he needed heart surgery anyways. And so he actually crashed as they were transferring him in the hallway.

Cassie Carrigan (10:57.934)

And y'all are calm like 99.9 % of the time, which I appreciate. This was not one of those moments because it was so dire. Everybody's running, you we couldn't go in the elevator with him because he was at 28. The nurse yelled back 28 and I knew, I knew what she meant. You know, I knew I had been in it long enough to know at that point. So they rushed him down. They got him on ECMO.

Daphna Yasova Barbeau, MD (11:05.358)

Mm-mm. I believe it.

Ben Courchia (11:14.559)

Wow.

Cassie Carrigan (11:25.162)

later that day. So this is a very traumatic day for me and for our whole yeah go ahead.

Ben Courchia (11:27.99)

Can I, no, I was going to go back to the second mode decision because I wanted to ask you a little bit, do you feel that you said you didn't want to make that decision, you wanted them to tell you what should be done. How do you feel about this concept of cognitive sort of burnout where you maybe, is it that at that point you're like, I am done with, I am done.

having this ability to make decisions. I just want to get to the resolution as quickly as possible. A positive resolution, ideally, but can you talk to us a little bit about where you stand when you say about that specific, specifically about that decision? Because obviously as a parent, you want to be the decision maker. You don't want other people to make decisions for your baby. But in the NICU, through the course you've been through, sometimes it's a little bit too much and you are, you have complete.

burnt out when it comes to being able to make these complex decisions.

Cassie Carrigan (12:29.004)

Yeah, absolutely. As a lay person, I am met with this sick baby that I know it is my responsibility to be as great as advocate as his mother. And so I am faced with this very steep learning curve, just about medical language, about anatomy, about his specific anatomy, about his symptoms, about possible treatments. And so I...

immediately took a deep dive into all of that. I was at every round, I asked a million questions, I proposed things, that was the kind of mother that I was. And so I think as the days went on and as things became more difficult, I was exhausted, obviously, emotionally, mentally, physically, all of the things. And so I needed input.

from the doctors. And even like, I was like, why are you asking me? I'm pretty sure I asked the doctor, it's like, why are you asking me if I want to do this? I think I was just confused. And so that was helpful for me, because then they explained to me, you know, just like you said, wanting me to make the decisions for my son, which of course I wanted to do. And so I needed the input though, so I could have all of the facts.

so that I could make the best decision for my son. And so I think, especially with something like ECMO, which was so foreign to me, I needed more information so that I can make the decision that was best for my son. And so almost that partnership, right, of, hey, I've looked at these things, but I know my brain isn't as clear as it normally is.

Daphna Yasova Barbeau, MD (14:13.369)

Hmm.

Cassie Carrigan (14:21.686)

And so you know about this more than I do, so can you help me understand?

Daphna Yasova Barbeau, MD (14:27.438)

And I have kind of a follow-up question to that. You stated it so eloquently about that decisions like this should really be a partnership. And it almost seems like medicine used to be very paternalistic, right? We just made decisions. We didn't even tell patients what we were doing. We just made decisions. We didn't ask for their opinions. We didn't ask for any additional data. I sometimes worry the pendulum has swung so far that often we present things to parents as if like,

This is totally your choice and, and it's whatever you think and want. parents bring this tremendous level of expertise and their values and their family's, ethical compass, whatever that might be. But then sometimes I think we've left ourselves out of the equation and I think we bring some expertise to the situation. So how can we bring the pendulum more to center and kind of focus on.

partnership like you said

Cassie Carrigan (15:28.482)

Yeah, I think it's just stating it exactly like you said, you know, affirming the parent in their role as the parent, that this is your child. We want you to be a part of the decision-making process, and we want you to feel comfortable with the decisions that are being made. And here are the things that we feel like we can offer from our medical expertise.

and how can these things work together? What do you see and how does this information impact what you're thinking and what you're feeling for your child? So I think it's just stating it and then asking the parent, do they have thoughts? Do they have questions? And reminding them that you want to work with them. And I would say for the most part, we had a really great experience with our care team.

But I think it's just as simple even as stating that you are important, you play a huge part in this process. And here is our medical expertise. How can these things work together?

Daphna Yasova Barbeau, MD (16:38.158)

love that. And I think you highlighted that too with your story around the genetic testing, that there are ways that we can put on the pedestal of the family's values and give an opinion on the decision. So thank you for your candor with that, but we'll let you continue.

Cassie Carrigan (16:57.038)

Yeah, of course. Yes, yes. So that day that he got off of onto ECMO, of course, he's on blood thinners now because of the clot risk. And later that day, a few hours later, his catheter came out and they could not get it back in. Basically, it seemed like they kept hitting a wall. So I think he probably had another defect in his urinary tract or system.

We just hadn't quite gotten there. wasn't the top of the list priority. And this caused a lot of bleeding. They ended up having to place it with the scope and they were able to get it back in. So of course he had to come off of his blood thinners or adjust those because of all the bleeding. So the next about six days he was on ECMO, I would say he might've had one good day in there and that good day means stable.

He was still fairly low in his oxygen, especially given on ECMO, I would say like maybe upper 80s. And he was peeing abnormal amounts. His pee had been normal up to this point. But I mean, he was peeing like what three adults would pee in a day. And he was like a, you know, barely a, you know, five pound baby, probably less than that. And so again, that was another mystery of what was going on.

The day before he died, we got the genetic test back. I found out months later that the neonatologist at the other hospital had expedited this test and praise God that she did because this allowed us to say goodbye to our son. We got the genetic test. Of course, they brought us into the conference room and I knew immediately when the doctor said we got his test back, we need to go and discuss him. I knew it was bad.

And I asked him, it's bad, isn't it? And he said, yeah, it's not good. They told us this gene deletion, this FOXF1 gene that is connected to this rare lung disease, alveolar capillary dysplasia. And basically he couldn't oxygenate in his own blood. And they told us that it is fatal and that they would give us as much time that we needed before we took him off ECMO. So the next day we brought our family up.

Cassie Carrigan (19:23.776)

And friends came to say goodbye. Shortly after our other two children left, he actually started to crash on ECMO. And they said, you know, we've done everything we can. So that made the decision a little bit easier as a parent to take him off ECMO. And we spent those that last hour with him. And yeah, that is his journey.

Daphna Yasova Barbeau, MD (19:52.282)

Thank you, Cassie, for sharing that. I know you've done this many times, but it's a feat of bravery every time I think parents have to share their stories. I thank you for sharing, Caleb, with us. There's so much to unpack. We have so many questions. We've already interrupted you for questions. But one thing that I'm struck about your story right off the bat, and I feel like

Ben Courchia (19:52.64)

Thank you.

Daphna Yasova Barbeau, MD (20:20.544)

lots of NICU parents, whose babies end up doing well, have this sense that every time I talk to the doctor or the team, I'm getting bad news. And I mean, that was certainly true for your family, even on the prenatal side. It seems like every visit was a new diagnosis. And how do you reconcile that? How do you come see us the next day, agree to come on rounds, agree to

hear what we have to say when it seems like, and I've had parents say this, like every time I come here, you guys tell me something new that's not good. You know, what recommendation do you have for parents who are going through this? And for us on the medical staff about how to be realistic and honest with parents, but cognizant that we're continuing to pile things on top of you.

Cassie Carrigan (21:18.2)

Yeah, that's such a hard question. I mean, the first thing that comes to my mind as a parent, and you all can probably relate to this, is that even with your children who are living, as parents, we make a ton of sacrifices for our children. And so continuing to show up every day in the rounds, there is a sacrifice to that for you personally as a parent, because it is so difficult emotionally and mentally.

And yet you wouldn't be anywhere else even if you continue to get bad news. And so I think just remembering the love that you have for your child allows you to keep showing up. And that love is so great that even if it continues to be bad news, you're not going to do anything different. You will not leave your child's side. And then I think to, you know, the medical teams,

You know, one thing, and I said this probably more than one time, but I would often say to my doctors, I need you to remember that like, this is your job, but this is my life. And if I'm honest, I wish we could switch places. I'd rather this be your life and this be my job because this is so difficult for me. And then I also had...

I mean, at one point I asked our doctor, I need you to be honest with me and tell me, like, have you done everything for him and nothing's working? And she said, no, but we're close. And that was, that's my personality. That's not a right or a wrong. Every parent's going to do that different, but that's what I needed. And so I was grateful for the doctors who were willing to be honest with me and they were so kind.

and their approach. And I think it's just that, you know, when you're sharing bad news, just, you know, pair it with the empathy, the compassion, the kindness, even your tone of voice, all of that helps a parent so much in those really difficult conversations.

Ben Courchia (23:32.982)

What an impactful statement. I would want to press you on one topic because it's such a difficult story to listen to. What are some of the...

positive aspects of this journey that stayed with you? The positive memories, because I feel like, especially as a parent, you do want to shed yourself of the negative memories from the hospitalization, which obviously parallels Caleb's short life. So what are the positive memories? Because for us as clinicians, like you said, it is our job, and maybe we can learn from the answer you're gonna give us and lean in to these experiences to try to maximize.

positivity.

Cassie Carrigan (24:26.444)

Yeah, I I think, you know, my relationships that I had with our care team, mean, Sasha being one of them, that is a huge positive piece to the story. I would have never have known them if this wasn't the case. And of course, I wish I didn't, right? I wish Caleb had not been sick, of course. But that is a huge positive thing for me and these relationships that I have with.

people who cared for my son and fought for him alongside of me. I mean, they feel like family to me, so they can't get rid of me even if they want to. And then I think the connection to other families and parents whose children either have the same disease or who have walked a really difficult road and have also lost their children.

My husband and get to mentor couples who've lost their children through an organization called Able Speaks, which I can speak to more. And I got into DJing after my son passed away because I knew I needed to do something for me that I enjoyed and that would get me out of the house. So I could keep going on this. But I think in the hospital, the...

the beautiful human side came out.

I saw it in myself, I saw it in my son, I saw it in my care team, because we were trying, we were all trying to figure out what was going on and to help my son. Of course, everybody wanted him to live. And so everybody was giving all that they could. And so we have this, we're strangers technically, but we had this like common goal, this good, true, beautiful common goal. And we were all working towards that.

Cassie Carrigan (26:22.7)

And we don't always get to be in situations like that because of many reasons. And so I think the human piece when I look back is a beautiful thing and it has positively impacted me. And I account that to my son and his journey and his fight and all that he gave us in those short days.

Ben Courchia (26:47.542)

Thank you for that answer. You're giving us an amazing segue to bring Sasha into the fold. Sasha, I would love to hear your perspective and specifically as we get attached to our patients because while it is a job, think all of us are deeply attached to the babies that we care for.

Daphna Yasova Barbeau, MD (26:48.506)

Yeah.

Daphna Yasova Barbeau, MD (26:54.905)

Mm-hmm.

Ben Courchia (27:10.952)

and I think even more so the babies that stay with us in the NICU for extended hospitalizations. think it's even more obvious there. What is your recipe? What is your approach to fostering such a deep connection with the parents to the point that you are even here today supporting Cassie and telling us about Caleb's story?

Sacha Force (27:40.42)

Yeah, that's a great question. I think a lot of what where my connection comes is why I into NICU nursing. I was a NICU baby back in 77, born in Canada, spent three weeks in the NICU. You know, my dad had the...

I said, well, how did they feed me? And he's like, I don't know. They took the syringe and they just like slammed it in and your stomach went from flat to big. Okay. Right. That was how my dad just described how I got fed through a feeding tube back in, I know, back in 1977. And, um, and I had some issues. I had a cardiac defect. I had a VSD.

Ben Courchia (28:11.07)

You

Daphna Yasova Barbeau, MD (28:11.866)

And now we do the opposite, right?

Sacha Force (28:22.404)

and dislocated hips and some other things. So my tangible connection to the babies was my own life experience. And you learn very quickly, and I am very grateful for the on-nurse onboarding experience that I had back in 2003 when I started, that yes, the baby is your patient.

But you have more than one responsibility in that room, and that is the family. And we were taught from the very beginning and how I was precepted and watching the nurses and emulating them of how do you communicate with family? How do you keep them involved? How do you...

try to reconcile the fact that the second that baby walks into the NICU, really all of that family's control is stripped. So, and I had a, I have another mom that I'm staying in touch with and she gave a very poignant example.

several years after her baby was discharged. And she's like, I was jealous of you. And I said, I don't understand why, like, I don't, I said, I didn't get it. She's like, well, you, you knew what was best for my baby and you were making decisions for him, but that was my job. I'm his mother. Like, and I, I didn't know that. And so I, I try to take,

pieces and gifts and moments and conversations from all of the families that I have cared for to make sure that that I'm being intentional in those moments and that I'm

Sacha Force (30:24.798)

on a small scale, what Cassie was talking about in terms of her conversations with NEOs and providers, that's on a large scale. But on a small individual scale, I'm taking and trying to empower nurses to engage those families in the moment instead of just going in and doing the cares and ...

say and changing the diaper and doing all the things that those three actions are really the only things that a parent can do change the diaper take the temp and change the pull socks okay

ask permission, like ask, say, hey, I have to go in and do X, Y, and Z. Are you okay if I change his diaper while I'm in there? know, engaging the families and really, but it's gotta be intentional in terms of watching Cassie be a parent. That was a gift in and of itself to me.

the perspective that she brought. And I will share this story a little bit. I've shared this with her. I was not raised religious and Cassie and Jeff's life is very faith-based.

I will be honest that I had some stereotypes and I had some generalizations that I carried with me in terms of it doesn't matter what the results are, things like that in terms, and this was really surrounding the genetic testing because she was, she was very firm, very present, very...

Sacha Force (32:14.294)

No, we're done. We're done with the genetic testing. I think what the neo in the moment did was really point out what those tests yield. But Cassie's ability to have a super high determined faith-based path.

shattered shattered my my stereotypes of you can be highly faith based, you can be very dedicated and still want data and still want the information and still and not kind of flip the other way and stereotype the data as being like doctors trying to find something wrong when there's nothing wrong. And

I still take that couple of moments in caring for Caleb that stood out to me. One was in the very beginning and Cassie didn't talk about this, it was a first for me. Her first day up there, we're looking at x-rays out in the hallway.

on the computer screen and the neonatologist that was on was trying to talk to her about, so here you can see the stomach, right? We're like walking through the x-ray and then we see nothing. Absolutely nothing. Like all the way to the end, we see nothing. And Cassie's comment was like, so are you telling me my baby doesn't have intestine?

And he was like, well, I'm almost positive he does, but I just can't see it, right? Because there's no air in there and there's no stool in there. Like there's nothing that shows up on an x-ray to prove to me that it's there. And.

Sacha Force (34:26.722)

That moment for me was like, okay, well, that's also a first for me to have those moments. But Cassie was like, okay, well, we're gonna, know, she rolled with it. She asked great questions. She was there. The way she parented, the way Jeff, her husband was there as well.

was a beautiful thing for me to watch. As Caleb got worse from a bedside perspective, it's hard as a doctor to...

have your interventions not be working and you're like, this is not working. I don't know why it's not working. And then as a bedside nurse to have to document all the not working, okay, is rough. And there can be like, you know, a disconnect between.

the bedside team and the doctors because you're like, well, I don't know what to do. I mean, I know I kept calling. I kept saying, can somebody come please echo make sure the PDA is still open. Okay. The PDA was always open. Like it was never, it was never the co-ark.

the you know, it was never that and so there there was lots of things and Cassie was wonderful in terms of I see you. I see you advocating for him. I see all the things right she was able to be present and and I think a lot of that comes from partially her background of what her professional life is.

Sacha Force (36:15.712)

and her ability to have self care. Okay. So I think self care is a big thing because she was able to at, to come in present. I know at children's that got weary and, and, and her ability to do that, Wayne, when, when she got to children's and, being on ECMO. I think, because then she was, she really never, they, they really never left children's. And I think that's where,

it gets hard, but in terms of carrying over, I was Cassie's bedside nurse and we kept in touch. And then I became an educator.

And I've always wanted to become an educator. NRP is my like ultimate passion. Okay. But I also onboard new grads and, and new grads are such a beautiful gift to the nursing profession. And Cassie has always wanted to carry on Caleb's story. And I carry on Caleb's story in terms of an anatomy lesson. Hey, you, you better make sure you are

spreading those little cute butt cheeks and making sure that this baby has, you know, normal anatomy down there. and I share that story every time I can, but Cassie now comes and talks to, every single one of my,

Daphna Yasova Barbeau, MD (37:37.178)

Thank

Sacha Force (37:47.748)

new cohorts, new grads that come into our system. And she shares her story. She has been part of a panel that we talk about when we do perinatal bereavement as well.

and but sharing Caleb's story and really having her be a face that the new grads can tangibly connect to. There is a bigger picture here than just you going in, taking vitals on your baby, changing the position. There's so much more to being in the NICU. And your impact is great and vast and large and beautiful and

and Cassie really helps empower them. So that is really a big part of my journey and then my connection with Cassie and then bringing her back in to really help the new generation of nurses to be able to be intentional with their families.

Daphna Yasova Barbeau, MD (38:51.118)

Sasha, thank you so much for sharing, especially we all have those babies and families that we carry with us, I mean, forever, right? Into every clinical scenario moving forward. And I have a few more questions in particular about educating staff, but I wanted to ask Cassie quickly. There are not a lot of forums where parents get to hear healthcare professionals talking about.

Sacha Force (38:58.414)

Yep.

Yep.

Yeah. Yeah.

Daphna Yasova Barbeau, MD (39:18.424)

those interactions. think we finally have forums for parents where we get to hear about parents, but not so much the other way around. And I wonder if there's value in that for parents to hear about how you change us and how your babies change us and our care moving forward, because maybe there is value and we have not created a space for that.

Cassie Carrigan (39:45.354)

Absolutely. I mean, it would definitely be a positive impact for parents to hear that, especially in my scenario where my child has passed away. To know that his story and his legacy and carries on and that his care team still remembers him is a huge gift to my heart and my mind and my soul.

And I think, you one thing I felt like the day that Caleb died, obviously losing him was the biggest loss, the most difficult thing I've ever walked. Also that day, I felt like I had another huge loss that I didn't realize in the moment was my care team. And like, how do I connect with them afterwards? And I get, there are so many ethical, legal things with that. And I totally understand that. I'm actually trying to implement that at Children's.

here in Colorado of figuring out a way to do that in a legal, ethical way of a parent so desires. I kind of asked to come back and they let me come back. And I talked to another doctor about his disease, probably like four months after he died. I just was trying to learn more and I was in a better head space at that point. I mean, they were so gracious to let me come up and have those conversations, but that was...

That was really hard for me to lose that. I'm like, do I never get to talk to you ever again? And we were at two hospitals too. And when we left one, he was still alive. So I'm like, I don't know if they know that he died. There was just a lot of sadness in that for me. Cause like I said, they felt like family to me and they knew my son more than anybody else got to know him. Yeah.

Daphna Yasova Barbeau, MD (41:15.31)

you

Daphna Yasova Barbeau, MD (41:37.08)

love that, especially this point about bearing witness for families when so many people never get to meet your baby. I think that's such a neat opportunity. And I guess for my next question, I guess I'll have you both answer because what you have done, I think is truly phenomenal. We talk a lot about family integrated care and having family councils, but using

Sacha Force (41:41.762)

business.

Sacha Force (41:45.571)

Yeah.

Daphna Yasova Barbeau, MD (42:04.292)

Carrying families with us as part of our education, especially our onboarding, I think is incredibly valuable. And I'd love for you guys to share that experience because I am hopeful that everybody can learn from you. It's not just about asking parents questions and having them respond behind closed doors about what they want and changing for the NICU. But you guys have really turned it on its head and said, we're gonna bring parents to teach

our incoming staff and I hope that people will learn from you. So tell me a little bit about what that looks like logistically.

Sacha Force (42:41.364)

Yeah, so our program we have, so this year we have three points in the year where we onboard new grad nurses. The way that our program works, it's

It's 16 weeks of orientation and then about halfway through, we bring everybody off the floor and we do a skills intensive week. And the reason being is, and the reason why we bring everybody in is because I cover three states. So we bring all of our new grads from every, all three states into one location. And we actually combine and we, and we do it with our OBE labor delivery postpartum teams as well.

So we bring everybody in. So now our OB and LND teams also get to hear Cassie's story and vice versa. But we bring them all together and, and that is very, it's a team building. It's cohesive. You realize that you are not alone.

you realize that you cannot do this by yourself. You're not going to, especially in this facility, a delivery by yourself and do all the things. So we teach the village concept in that. But really, I have Cassie go through the story because I want...

the nurses and you don't get this in nursing school. want nurses to know what is the antenatal story? What is the visits like? What are, what is she being told? What is she being tested for? Right. And then from a delivery on, it's really like, how do we communicate what's happening? Cause this is a very real story. is,

Sacha Force (44:35.47)

Cassie is unique and doesn't happen all the time, but.

it is there. It is that that could be another family's daily occurrence. And so I do have her talk about the disease process. And I link it back to previous lectures that I have given those new grads. Hey, when we talk about like, Caleb's disease, what's his issue? Think back to fetal circulation, what has to be happening, you know, when you're born to be able to oxygenate your blood. So we really do incorporate

and pull from all of the content that we give the new grads. And I think just physically being in the same room as Cassie, it's not on Zoom. It's not, it's something that is very real, that is very present. And we hope to expand it. We hope to expand it to more families and more parents and really have an opportunity to

impart that connection to the parent because we all know new grad nurses are very task oriented. They're very worried and scared and like, I can't take an hour to hang my fluids and I can't do this. they're very worried about that. And I think trying to temper that with allowing them

and giving them permission. I don't expect you to be perfect every day, but what I do want you to do is to try to have five minutes of present moment with that mom doing kangaroo care, okay, in your day. And can we give them permission and confidence to do that? So yeah, no, we really love it. So Cassie, I don't know what your take is on it.

Daphna Yasova Barbeau, MD (46:33.73)

I love that. Yeah, Cassie, what has that been like for you?

Cassie Carrigan (46:37.506)

I mean, it is, I always say it feels like God's kindness to me to get to share my son's story and to continue his legacy. It feels like spiritual mothering to me, because even though he's not here physically with me, I think he's in heaven, obviously. And but it's a way for me to mother him, even though he's not present with me. So, I mean, it has been a huge gift and

I love getting to encourage. That's a big thing for me. I want to encourage you as medical staff. I mean, it is a hard job that y'all have and it's a beautiful job and a wonderful job. And so I get to encourage them and remind them. And I say this, that every baby has dignity because they're human. They have it right when they're born.

Sacha Force (47:31.428)

Thank you.

Cassie Carrigan (47:32.224)

and you don't have to give it, you just get to affirm it. So even trying to remove some pressure for them too, of like, you just get to affirm it through your intelligence, through your care, through your compassion. And to remind them as a mental health therapist too, that like they have to take care of themselves. Because if they don't, they're gonna burn out. I mean, I would say that's true for most things in life, but to be able to separate yourself. Like I'm also not asking you as a parent,

Daphna Yasova Barbeau, MD (47:51.93)

Hmm.

Cassie Carrigan (48:02.21)

to be consumed with me so much that you can't come and show up and do your job because I need you to do your job. I often say, I need your mind and your heart. I need both things. I need you to bring both of those things to the table. Because I wanted the smartest doctor in there, the smartest nurses to figure out what was going on. And so I get to encourage them and to share our story. mean, it's really a beautiful

thing and to know that Sasha knew him I learn something new I feel like about Caleb every time I do this because Sasha will share a story and I'm like, I didn't know that or I don't remember that for whatever reason. And so that is such a gift as well.

Daphna Yasova Barbeau, MD (48:43.737)

Ha ha ha.

Daphna Yasova Barbeau, MD (48:49.102)

love that. Thank you guys for not just sharing your stories, but really truly a model that I think can be done everywhere. So I hope people will take note of that. We still have hundreds of questions, Cassie, but I recognize that, again, there aren't a lot of spaces for people to hear from bereaved parents. And so I want to...

Sacha Force (48:54.468)

Thank you.

Cassie Carrigan (48:58.818)

Yes.

Daphna Yasova Barbeau, MD (49:13.53)

access your expertise on this and mirror what Ben said. I want to focus on the things that people do right when it comes to witnessing your grief, walking with you in grief and helping you in bereavement. What are some resources that have been valuable and what are things that people have said or done that has been helpful?

Cassie Carrigan (49:44.546)

Yeah, definitely. And like Sauster said, we're hoping to create this course in a digital form so we can spread the love. But as far as my grief journey goes, knew, especially as a mental health therapist, I'm biased in this area, that I couldn't go around my grief. I had to go straight through it. That was the only way I was going to get any sort of healing on this side of things.

And so I was pretty, I faced it pretty intensely, but I am an intense person too. So again, that's my personality showing up. I think we struggle as a culture with grief because it's uncomfortable. We have a hard time sitting with people in their grief because it makes us uncomfortable or we want to fix it for them. And sometimes we have

we don't do that well because we don't even know how to sit with our own pain or our own sorrow. So we definitely can't do that with other people. And so I think there is a freedom in knowing even for you as medical professionals that like you can't fix someone's child passing away. There's nothing you can do or say that's gonna fix that.

You know, the only way to fix that is to bring them back, which obviously we know we can't do. And so even to remove the pressure, and I think someone's willingness just to sit in the pain, not try to fix it, not try to put words on it that are, don't worry, you won't always feel this way, right? Things like that, or God needed another angel. Well, I don't agree with that. And if he did, well, I'm mad at him. I don't want, you know.

And so let's wrestle through that, right? Like whatever it might be, just someone's willingness to sit in the pain, whether it's silence, whether it's crying, whether it's just affirming, like this is so hard and I'm so sorry. And even sorry is not enough, but that's the best words I can form to show you that I care. And so I think that is the key for us.

Cassie Carrigan (52:11.692)

whether it is in the hospital, outside of the hospital, is a willingness to sit in the pain and to not try to rush someone through it. Our culture is like, okay, I'll give you maybe two to four weeks to grieve this and then let's move on. Obviously that's a generalization, but I think all of those things have been really helpful for me to connect with other moms who walk similar roads.

like I said, we get to mentor through, or an organization called Able Speaks where they, basically walk alongside couples who get a life limiting diagnosis while pregnant and can, and choose to carry to full term. we got connected with them after Caleb died, cause obviously we didn't know that he had a fatal disease. but that has been really meaningful for us. They do a great job caring for their families. They walk with them through doctors visits through.

whatever the birth might look like. And if the child lives, they help with celebration of life things. They send us t-shirts with our kids' names on it. We have family retreats. So even for you guys in the NICU, to connect families to these types of resources can be helpful. Whether that's if they are touring before giving birth, or maybe the baby arrives in the NICU but is not doing well or...

you know, might only have a few hours or days of living. Those are all good opportunities to connect people to AbleSpeaks. But I think the support, because often when you lose a child, you feel it's very isolating. It can be. And even within this group, our stories are still not the same. And so I think the more you can bring people in and the willingness to sit in the pain,

can be really helpful because it doesn't feel as isolating. Like I always make a joke, it's actually from a show, but where I feel like sometimes I walk into a space and I have like a dead baby face. That's what it feels like. And even though nobody's putting that on me, I can feel that way. So to be able to be in community with people who have walked somewhat of a similar road is really helpful.

Ben Courchia (54:38.122)

Thank you, thank you, Kit.

Sacha Force (54:38.466)

Yeah, I mean, I agree with that. And I think this is somewhat an area that can always have improvement and we can always be working hard to make it better. I know within our institution, we're trying hard to elevate the education, to elevate the awareness of all teams, all labor and delivery teams, postpartum teams, NICU teams, ED teams, in terms of

really, it's communication. It's all about communication and how do you communicate with this family in a sensitive, compassionate way. And it's not the same as communicating with a parent whose baby is still alive. So I think it's all about exposure.

and really recognizing the impact of negative words, right? Or the quote, the wrong thing to say and the impact of that. And then how do we help turn the corner and make sure that staff are, and that nurses and secretaries and physicians are all communicating in...

in a present intentional way, meaning they know before they walk in that room, right? How they're gonna communicate with that family. And it's hard because it is a very uncomfortable topic for our culture. And so it is hard to break down some of the barriers even to have us absorb the information. Cause we have the information about how to...

what phrases to use, how to communicate compassionately with a mom experiencing a seven week miscarriage in the ED, the same as a 22 week loss on labor and delivery, things like that. But it's.

Sacha Force (56:48.992)

it's are you internalizing that? Yeah, I've given it to you, but can you internalize it and actually use the tools that we're giving you? So I think that's always gonna be a work in progress, which I think most healthcare institutions are really trying hard to help be better at this. And I know ours is definitely one of them, so.

Ben Courchia (57:13.364)

Yeah, I think it has to do with the fact that you get better at it by practicing, and we're not super keen on putting ourselves in these situations. it's not like you were talking about resuscitation in the delivery room. I remember as a trainee, I would sort of raise my hand and be like, hey, let me go. And I would want to be the first one through the door to try to practice and experience that. But no one does this for difficult situations, difficult.

medical complex patients. It's not something we want to do, and so I think that creates a little bit of rest that we have to sort of overcome, like you said, because we do have the tools.

Sacha Force (57:47.512)

Yeah, well, nobody likes to practice role play either. Like we don't, we all, everybody's advocating for role play stuff and nobody wants to do that. Like that's never really been a comfortable way for, for us to learn. We're not very good at, you know, nobody is comfortable getting up in front of somebody and practicing that. So yeah, it's hard.

Ben Courchia (58:05.632)

Yeah, as intensive care people, this is not really something that we enjoy doing somehow. But there are definitely benefits. Sasha, Cassie, thank you so much for sharing this amazing journey and for sharing, to be honest, lot of tools for us to reflect on and that, my opinion, can directly impact how we care for families in the NICU. I think that truly

Sacha Force (58:17.22)

Yeah.

Ben Courchia (58:34.708)

will should resonate with a lot of our listeners and it did resonate with me as well. So thank you both for your time and for your candor.

Sacha Force (58:43.673)

Absolutely, it's been our pleasure to be here. Thank you.

Ben Courchia (58:46.678)

Thank you both.

Cassie Carrigan (58:46.892)

Yes, thank you for having me and us and letting me share Caleb's story and our family's story. It's such a gift.

Ben Courchia (58:54.454)

Appreciate that. Thank you.