After the PICU: Understanding Post ICU Trauma in Kids

Dr. Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each episode, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change, how you care for kids.

Welcome to Talking Pediatrics. I’m your host, Dr. Kade Goepferd. When a child faces a life-threatening illness or injury, we often assume they have recovered when they leave the ICU or the hospital or graduate from follow-up. For many kids and families. However, the traumatic stress of an ICU stay or a life-threatening illness or injury lingers with families often searching for help and answers in how to best support their child. Joining us today is Jen Aspengren, founder and CEO of Alongside Network, an organization that works directly with families to validate, connect, and support them as they adjust to life after the hospital. We’re going to talk more about post ICU-trauma and the gaps in care and experience that families often feel after their initial recovery from serious medical events. Jen, it is wonderful to have you on the podcast today.

Jen Aspengren: It’s so nice to be here. Thank you.

Dr. Kade Goepferd: So I first met you when you were a new mom. You’re one of my former patients in primary care with both of your sons, but particularly with your oldest son and I never thought that we’d go from me and you in the office with a brand new baby to you and me on a podcast.

Jen Aspengren: Right, exactly. And I have to say, I didn’t think I’d be hearing you on the radio and seeing your name in the newspaper all the time either. So there are all sorts of surprises.

Dr. Kade Goepferd: Life takes us on unexpected twists and turns. So speaking of your sons, can you tell us a little bit more about your personal story and your journey with your son that led you to this topic and why we’re having this conversation today?

Jen Aspengren: So when my youngest son was seven months old, he had a strider that you were with us, didn’t follow a typical croup pattern, and we quickly realized it was subglottic stenosis, congenital. Quickly set him up for a laryngotracheal repair. I hope I’m saying that right. And everything went very well. He was intubated for a week. It was a long week for all of us. You visited us every day in the hospital and was in the hospital for a couple of weeks after. Brought him home and in the end, there were some more surprises, I guess, in store for us. So we brought him home and he was just a really different kid than we had brought to the hospital. He had had a really hard extubation. I sometimes think of that. I’m not sure what happened exactly or it was just the whole experience. But he came home as a really different kid and essentially scream cried for nine months straight. We kept bringing him back to the surgeon. We brought him to the ER in the middle of the night many times, you and I talked about it, many times. We just really kept trying to figure out. At first I thought, did they leave something sharp in him? Why is he screaming all the time? And eventually you as our primary care said, I wonder if this is like a PTSD kind of thing?

And you were right. And also there was sort of this big question mark for all of us around what does that mean to have an infant who is experiencing this? Eventually he stopped crying. So we would take him in regularly for a scope, and one day we brought him home and our house was quiet. And I remember my husband and I just looking at each other, we’re sitting in the porch with him and he was just quiet. And we hadn’t heard him quiet in a very, very long time. And I later learned many years later that he had sort of reached a developmental stage where home felt safe and he could have this experience and come home and feel okay, but we knew enough about trauma. I think at that point I knew very little, but knew enough to know it wasn’t done. That wasn’t it.

So always felt like it’s still in there, what do we do? And we brought him to some different therapists and didn’t feel like we quite got the answers that we were looking for. And then, yeah, when he was seven, he had a major mental health crisis. And at that point we found the right support for him and for our family, to really understand what had happened and what we could do to support him and to support our family. But it took us way too long and I think that’s what really got me so interested in this topic and to understand what happened to him and to our family and what does it look like for other families.

Dr. Kade Goepferd: Thank you for sharing your story first of all. I think it’s a gift anytime patients share their stories with us, but particularly you and your story and where it’s led you in your work. I have the benefit of having been with you on a lot of that journey and I distinctly remember that it was the crying, but you also just talk distinctly when you were telling your story just now about how he was a different kid. There just seemed to be this personality change. There was this easygoing baby who seemed to do really well to a fearful clinging young child or toddler that was just really different than what you had experienced before. I know I didn’t talk to you about it ahead of time because it wasn’t something that was on my radar. Did anyone in the ICU or as you were going through your experience talk to you about, well, you might expect these emotional changes or these things to happen in your child after this stay? Was that something that came up at all?

Jen Aspengren: Honestly, it wasn’t. Yeah, and I think that that’s pretty typical for most families around the country. It’s just something that folks aren’t trained on. So it’s not on the radar in a way that we at alongside network would like it to be. So that’s really what our work is focused on.

Dr. Kade Goepferd: We’re so focused in medical care on the acute injury or illness. So a child survives, maybe meningitis where they’re intubated in the ICU or a near drowning or something like that. And when they medically recover, we talk about it as if they made it. They made it through. But I think what a lot of families experience or what I’ve learned from you and the work that you’ve done is that that’s just the first part of surviving and recovering is the part that happens in the hospital. And then there’s this whole piece that happens after. So what have you learned about post-ICU trauma? How did you come to learn more about it?

Jen Aspengren: So throughout the time that our child had finally stopped crying and before we’re sort of figuring out solutions, finally, I really began kind of digging around. So my professional background is 20 years of working with systems changing social entrepreneurs around the world. So these are individuals with large scale initiatives to shift some kind of system. So that frame was helpful, really began digging around and trying to understand what does this look like for other families? So did we fall through the cracks? Is this a larger systemic issue? What does it look like for families that don’t look like ours? We’re a white family navigating the system in our first language, feeling comfortable going toe to toe with doctors. That’s not the reality for most families or for many families. So what I found is that there are 20, even 25 years of research on this problem.

It’s broadly defined as pediatric medical traumatic stress, post ICU syndrome is a piece of that. And there are an amazing handful of solutions that have kind of grown up around the world to address this problem. Unfortunately, many of those solutions have not spread beyond the researchers who developed them. So founded alongside with the idea of becoming a clearing house of those solutions, putting families at the center of the question so that families are the ones of saying more of this, here’s what we wish people knew. We love this piece. Here’s where another gap purse. And then really being able to be a very kind research-focused organization that is relying on what’s out there already, but sort of helping to bring it into a practical experience.

Dr. Kade Goepferd: So teach me or teach our listeners, both of us, about post medical traumatic stress and what that looks like and how patients may experience it and I would presume it’s very different depending on the age of the child and developmental stages you were referencing with your son.

Jen Aspengren: Yeah, what’s been surprising to me is it doesn’t always look different regarding stage and age and what the intervention or what the illness or injury may have been. We know that 80% of families who have a child with a life-threatening illness or injury experience some level of traumatic stress. So it’s very, very high, very, very common. We can sort of say virtually every family is having some level of traumatic stress after these experiences. So the definition of medical trauma, this is from the National Child Traumatic Safety Network, is a set of psychological and physiological responses of children and their families to pain, injury, medical procedures and invasive or frightening treatment experiences. So a researcher, Meghan Marsac that we work very closely with, she’s at the University of Kentucky, she often says, we can just say emotional reactions to scary medical stuff.

Jen Aspengren: So this is just stuff that kind of sticks with kids and their families. I think it’s really important you all see this every day, but how much it impacts across an entire family is a really important aspect of this question. So the likelihood of experiencing traumatic stress increases when there’s a threat to life, when there’s a little bit less support, sort of familial support or kind of community support, when parents or caregivers are employing a certain type of coping or if an older patient is employing a certain type of coping, specifically around avoidance, not really wanting to talk about what’s happening or really wanting to just compartmentalize it. And then of course, as we know about other kinds of trauma, if there are other emotional or health challenges or other types of trauma that families are experiencing, those can compound. So if you’re coming in and you are experiencing homelessness or housing insecurity or food insecurity, all of these can compound and increase your risk of experiencing medical traumatic stress and what it can look like is experiencing, re-experiencing. So kind of replaying what happened again, avoidance, really wanting to just sort of, I don’t want to go to that follow-up care appointment. I’m just going to keep rolling through and not comply or not do the thing that my doctor might be asking me to do. It can look like hyper arousal changes and thinking and mood. These are both for kids themselves and for their parents and siblings. So there are all of these sort of psychological symptoms that families experience and then for parents and caregivers, that can also be a component of guilt.

So thinking about, did I make the right choice when they ask me this thing, did I bring them in soon enough? Did I bring them to the right place? Did I say the right thing? All of these ways of replaying what their role might have been in the experience. So like other sources of trauma, there can be significant short and long-term impacts on emotional well-being, social interactions, academic or job performance. Everyone now sort of knows about ACEs in all of these ways that trauma and early childhood can impact our lives over time. And we really think of this as another sort of often overlooked source of early childhood or childhood trauma.

Dr. Kade Goepferd: It’s really interesting to hear you talk about the multiple sort of societal and environmental factors that may exacerbate symptoms for families. And in my head, I think about things that we see here at Children’s where maybe there’s an accident where a child is injured, but also maybe a parent or maybe there’s a loss of life of someone who was in the car. Or I think of things like a suicide attempt where there’s just layers upon layers of trauma probably already in a family. Issues around mental health, sometimes issues around identity, the patient population I take care of being trans and gender diverse. Knowing that this is a thing and knowing that certain factors may exacerbate it. What can we do to help families? You said no one talked to you about it when you were in the ICU. Would it have been helpful to talk about it? What are things that we can do proactively to help families?

Jen Aspengren: It’s really sort of giving a heads up. It’s what we very often hear from families. I wish someone had just told me that this was going to be a part of our experience. So we kind of think of from reception to surgery, respiratory therapy, everyone being trained to be able to be aware of that aspect of a family’s experience. The fact that a life-threatening illness or injury in pediatrics has an emotional component is not news to anyone who works at a hospital of course. But I think what we really see is maybe the extent to which that’s a really big significant factor for families. The training just hasn’t been there so far. So folks aren’t aware of the short and long-term impacts and how that might impact a family when you see them five years later, what that might look like.

Dr. Kade Goepferd: Well, and I’ve thought about this a lot since I had the experience with you and your family and I was off speaking about, I think it was actually I was doing a talk about ACEs and trauma and kids and a parent came up to me and shared the post-ICU experience of her child and kind of said, why isn’t anyone talking about this? I don’t understand why people aren’t talking about it. And I’ve thought about that a lot. And I wonder if sometimes there’s hesitancy on our part in medicine because we want to be seen as the healers, not as the trauma inducers. And we have to be comfortable with the fact that it’s a both and. Did your son need this surgery to save his life? Absolutely, yes, he did. Did being intubated in the ICU and spending two to three weeks in the hospital cause him traumatic stress? Yes, it did. And I think we have to be okay with both of those things. And I think so often we just want to be the healers. We just want to be on the side of, we made everything better, not well, we made this one thing better, but we did actually cause some trauma along the way and it’s okay for us to acknowledge that and to help a family through that. But I don’t know. I’m curious what you think about that because kind of where I’ve landed and why we don’t talk about it as much.

Jen Aspengren: I definitely hear you. I think the miracles that occur here, literally every day, every hour, are so incredible that it’s almost like we can’t get our brains wrapped around them. I mean, virtually every pediatric hospital in the country has a pretty significant or well-built bereavement program. That’s because so many of these kids weren’t surviving and going home. And so now see so many more kids going home with their families and so all we are looking at is we just need to catch up. We just need to sort of shift the way that we see this so that in the same way that bereavement programs are built into the mechanics of a hospital, we’re also sort of building in that support for families who so luckily get to bring their kids home. So it’s definitely a both/and and I think in so many spaces whose role is what, if you’re the one opening up the airway, that’s an incredible job you’ve got. And so might not feel like, and also, should I hold your hand through that? There are lots of people here. I got to be the one keeping you alive, kid. And I think what we really think about is one of the moms that we work with said, what if infection control? This was everyone’s job in very, very minor ways, pointing this question out to families. We don’t use the word trauma with families. We just say stress, this is so stressful. Of course you’re going to need some follow-up care. Of course you’re going to need some support coming through this.

Dr. Kade Goepferd: Sure. And are there places that are doing this really well or are there best practices that could help us learn how to do this better than we’re doing it now?

Jen Aspengren: There are some great practices around the country. I don’t know any hospital that says we sort of crack this nut and we do it exactly the way that we want to. In fact, Children’s Hospital of Philadelphia is where I might point, they have a center for pediatric traumatic stress. A lot of the research on this topic comes out of that center. And often even they are saying, oh man, we’re like not where we want to be.

So we really advocate for some practices that can be built into the workflow that can be just very, very minor touch ways of sort of shifting some of that experience both for the provider and the level of secondary traumatic stress that providers experience as part of the job. And for sort of modeling that for families so that families are seeing what it can look like to really pay attention to these emotional aspects or psychological aspects. And then normalize the need to address those.

Dr. Kade Goepferd: God bless social workers and hospitals for all that they take on for our families and for us as care teams and I think sometimes we just sort of put a lot of things into the generic hospital social worker basket, but I think to your point, if we had some workflow touch points that we did as clinicians that our nursing care team did, that our rehabs team did, we saw it as all of our jobs, that would probably go a long way.

Jen Aspengren: I think some of this framing can be helpful in actually also increasing, I think you all do an amazing job of partnering with parents and caregivers and families and trusting parents to be the expert on their child and listening to that experience and this is just another layer of that. So for example, we work with a congenital cardiologist who now talks about, she works with mostly adults and she talks about throughout so much of my career, I just felt frustrated. You know you’re supposed to come back every year. I haven’t seen you for five years. Your life is at risk. Why are you not here? And now she said she takes an extra 60 seconds to say to a patient who she hasn’t seen for a while, I’m sure you don’t want to be here. I understand why you wouldn’t want to be here. I understand that all the things you had to go through that were much harder than you should have had to go through. And also how can we work together to make this a better experience for you so that I can see you next year?

Dr. Kade Goepferd: I’m thinking a little bit about myself as a primary care clinician and other folks, what would a primary care clinician maybe see after a child has been hospitalized or gone through a life-threatening illness or injury that would be symptoms that might perk up their ears, that a family needs more support or more help?

Jen Aspengren: What we often see are re-experiencing. So parents and caregivers and family members and patients themselves really sort of replaying these events, wanting to talk about them, which in the short run can be a really good coping mechanism. But if it starts to go on too long, it’s hard to drop. It can look like avoidance, hyper arousal, changes in thinking and mood. So having trouble going back to second grade, which is really common. And then after it goes on for quite a while and it’s like they’re really not adjusting, what’s happening here. There are just sort of these extra psychological symptoms that we want to be looking for, and then for parents and caregivers, there’s sort of this extra layer that often happens which is focused on guilt. So did I make the right call? Did I bring them in soon enough? Did I do the things I needed to do to make sure that my kid was okay? And I hate to say it, but virtually every parent in our whole network can find something they wish they had done differently. Yeah. So part of it, and it’s just trying to work on alleviating ourselves of those feelings because they’re not serving us for sure.

Dr. Kade Goepferd: No, I mean to parent is to be guilty. I mean, that’s been my experience, whether you don’t think you caught something soon enough for your child from a health perspective, or you wish you had handled a situation differently. And I think there’s not a lot of help and dwelling there.

Jen Aspengren: Right, right. And it can be. So the experiences when you’re in the hospital are so vivid, these memories and you can think of something someone said or just replay it over and over and over in ways that feel more vivid than the rest of our lives.

Dr. Kade Goepferd: Sure.

Jen Aspengren: We do know that, like I said, 80% of families have some traumatic stress symptoms after these experiences, but 10 to 20% of children and up to 22% of parents have persistent symptoms. So this is sort of when it goes on past where we might expect it to continue,

Dr. Kade Goepferd: Which would be about how long?

Jen Aspengren: It depends I guess, on the family and the complexity. So are they continually being readmitted, so they’re being re-traumatized or having these experiences, is it ongoing or is it sort of like my family, we really had one major intervention, lots of follow up, but really we sort of carried on with our lives in the physical sense. So does it go on? Is it a year out and we’re still sort of replaying these memories and talking about them in our primary care meetings? Starts to feel like I’m a little bit surprised that this is what we’re talking about in this appointment. So the timing can look very different. One thing I also wanted to add, it’s an interesting component, is that often moms specifically can have up to 20% higher rates of medical traumatic stress than the child themselves. So while kind of across the family, it can look a little bit similarly, moms specifically can really sort of have a higher rate.

Dr. Kade Goepferd: I’m sure there’s a lot of cultural things that go into that. And I also wonder sometimes too, how parents, depending on their gender, may process emotions differently or have those symptoms picked up as well. I’d like to talk a little bit about the Alongside Network. So you mentioned earlier that given your background, this was sort of the direction that you took your experience in. But tell me a little bit more about alongside and what it is and what it does and why you started it.

Jen Aspengren: Yeah, absolutely. So our work at Alongside is really focused on minimizing and mitigating traumatic stress in pediatrics. So we do that in a couple of different ways. We kind of have two sides of the house. One is really focused on families and one is focused on providers. So when we talk about families, we have one key intervention that we use. It’s called the Take a Breath curriculum. It was developed in Melbourne, Australia at the Royal Children’s Hospital specifically for this purpose. Some incredible neuroscientists spent eight years of their lives developing, it’s a six week intervention. It happens all online. So families, once they’ve gone home, can access it very easily. And that intervention really focuses on three things. One, validation of experience. Two is really about building community. So we often talk about that’s where the magic happens, is when families can be in a space with someone for whom their story is not too big. So we very, very often hear from families. I’ve not been able to tell my whole story to anyone because the look of horror on their face when I start is enough to make me stop talking. But to be in a space where you hear your story and somebody else’s story suddenly feels like this space can hold all of this.

That can just be a massive relief. And to be in a space where you have other people who really get it, just knowing that that exists, we often see this giant exhale. And then the third component is really focused on coping skills. So this is an acceptance commitment therapy based curriculum. So the work is really focused on mindfulness, meaning-making sort of retraining some of our thoughts. So many folks have amazing coping skills and also we’re kind of reminding people to use them or how we use them in this situation.

Dr. Kade Goepferd: And how about for providers? What sort of resources do you offer for us so we can learn more and help our patients?

Jen Aspengren: So for providers, we do a lot of training and support for providers. So we’re right now partnering with the American Academy of Pediatrics, Minnesota chapter, in fact, doing series of five trainings, which all of you would be invited to join. Really focused on secondary traumatic stress in providers. And kind of that as the first line of patient care is caring for yourselves as providers, and then focusing on really training what is pediatric medical traumatic stress, how can you identify it and how can you support families through that experience? We’re working on building a short curriculum that can be sort of integrated throughout the day. Short mindfulness activities, like other coping skills that can be part of provider’s day, depending on kind where they’re working. I can share a couple of examples of what this has looked like for some providers. We had a nurse talk to us about learning some of these coping skills, and then she’s a NICU nurse. When she comes in to do a blood draw in the NICU, sort of putting her belly up to the bassinet, looking at this baby, taking three deep breaths and then going in to do the blood draw and how much more quickly she was able to complete the task and how much more regulated she felt doing that task.

So it’s just those small pauses. We know nobody has any time to be adding a bunch more into what you’re doing throughout the day, but these very, very tiny brief pauses that can sort of connect providers with their own bodies and then help them connect to patients. We think about what if every provider across a NICU said, let’s take three deep breaths together. I want your baby to feel your calm heartbeat before we pick her up. What would that teach the parent? What would that do to the provider? And how would that change the baby’s experience as well? So just really thinking about these very, very brief ways that we can integrate some level of regulation throughout the day.

Dr. Kade Goepferd: I think that’s great. And I even think in a primary care setting, how many kids hate going to the doctor because they don’t want shots. And if we could do some of that regulation with our medical assistants and our nurses who are doing injections with patients and families or doing procedures even like a throat swab, things like that, I think that would make a big difference. So how do we access these resources? Tell us how to get to the Alongside Network and the resources and trainings that you offer.

Jen Aspengren: Our website is alongsidenetwork.org. We have a growing presence on social media, I’ll say. On our website, are really great links to other resources such as healthcaretoolbox.org. This is the Center for Pediatric Traumatic Stress at CHOP. They have amazing modules, continuing ed credits. They kind of have the basics as they call them. The National Child Traumatic Stress Network has a toolkit for pediatric medical traumatic stress for health care providers. This is like a 40-page comprehensive downloadable document that’s really helpful.

Dr. Kade Goepferd: So in addition to the training that you’re doing with the Minnesota chapter, the AAP, which I’m super excited about, and I’m sure we can find it through the AAP’s website, you’re also going to be doing a Grand Rounds here at Children’s yourself and a psychologist. We’ll be sure to link that for listeners as well so they can find that resource.

Jen Aspengren: Terrific.

Dr. Kade Goepferd: Well, Jen, it’s been wonderful to have you on the podcast today. It’s been a gift to me to care for your family for so many years and watch your sons grow up to be the young men that they are now. Not all patients who go through the type of experience that you went through, go on to create a resource like the Alongside Network for other patients and families. So I just want to really thank you for your work and thank you for your advocacy and continuing to bring information and light to an issue that I think affects a lot of our families. So thanks so much for being here and for doing your work.

Jen Aspengren: Thank you so much.

Dr. Kade Goepferd: Thank you for listening to Talking Pediatrics. Come back next time for a new episode with our caregivers and experts in pediatric health. Our showrunner is Cora Nelson. Episodes are produced, engineered and edited by Jake Beaver. Our marketing representatives are Amie Juba and Krithika Devanathan. For information and additional episodes, check us out on your favorite podcast platform or go to childrensmn.org/talkingpediatrics.