Transcription:
Coping with Trauma

Prakash Chandran: Caring for a hospitalized child is often daunting for parents. The child's healthcare journey comes with complicated information presented by a large team of experts. Lifesaving procedures can be scary for the whole family. And while all of this is happening, life outside the hospital continues and parents have to balance, work, family and some semblance of self-care while they support their child.

At Le Bonheur Children's Hospital, care providers understand that taking care of the child also means taking care of the whole family. One support available is the Family Assistance Program, which offers mental health support to families. Dr. Carlos Torres is a clinical psychologist and he leads the program. A reoccurring theme in his work are feelings of isolation from families who say no one else can really understand what they're going through.

Dr. Torres is here with two amazing Le Bonheur mothers, Erin Lewis, and Anna Beeman, who each walked the path of loving their child through the long and complicated journey of hospitalization. We hope their insights remind other parents that you are not alone and that your presence is always enough.

This is the Peds Pod by Le Bonheur Children's Hospital. I'm your host, Prakash Chandran. So thank you all for joining me today. Dr. Torres, this is going to be your conversation. So I'm just going to go ahead and let you take the leap. Welcome.

Dr. Carlos Torres: Thank you. Thank you. And let me go ahead and extend my own thanks to everybody here and to the listeners. My hope is that this conversation is fruitful and productive and helps others who are in a very similar space. And I appreciate you using the word journey. I do see this as a journey going from hospital at times, and just the ins and outs of coming into any hospital can very much be a journey.

So with that being said, Anna, I'd like to start with you. What do you think surprised you the most about your journey?

Anna Beeman: There were so many things. I think at initial diagnosis, the thing that surprised me the most was the assumed expectation that I would understand a lot of what they were talking about right off the bat, whether it was a diagnosis or a treatment or even a mechanism for treatment, whether it was a PICC line or an infusion, or sometimes as simple as understanding how to make the bed fold out when you're staying overnight in a hospital for the first time with your child. Just that expectation of me that I should know these things. Not in a rude way, but just in a very matter of fact kind of way as it happens sometimes in the medical environment. That's certainly one of the things that stuck out to me.

Dr. Carlos Torres: Yeah. A lot of parents often tell me that they're just trying to make sense of what it means to be there. And that's such a great example of that. Those little things in that moment, you're already so overwhelmed. It can feel like so much. Erin, how about you? What do you think surprised you the most about your journey?

Erin Lewis: I would say for me and for our journey, how fast things can change in the hospital. You think things are going well one minute and then next they are not, and it really attributes to the anxiety that you as the parent have with your child in the hospital. And also, the loneliness that it can cause as well, you know, if your child is not doing well and there's not any visitors allowed or things like that. It can be a very lonely journey, I think, sometimes.

Dr. Carlos Torres: Erin, I certainly appreciate you saying that. I think it's really important for folks like me, the folks who come into the room and are at bedside, whether it's working with the patient or talking to the family, to recognize that that conversation we're having in the moment and how you're responding to it might not be true for you in the next day, the next half day, because things do change. And we need to be prepared for that in the sense that, when we come into the room, we need to be most present with where you are in that moment. Because for us, it's medical information that we're trying to convey. It's support that we're trying to offer. And if we're going to convey that information clearly, if we're going to be offer that support well, then we need to be present with wherever you are. And because that space is so fluid, where you were just moments ago might not be true anymore. So thank you for that gentle reminder that we should always be present when we walk into those rooms. Anna, I've got another question for you. As you look back at your journey, what need did you struggle to get while you were on that journey?

Anna Beeman: Well, there are probably a few things and the journey is not short. It's certainly not over. So it's definitely changed as my child has gotten older. But initially, you often get that phrase, "Let me know if you need anything." And I'm sure that everyone who says it means it, but often that's as far as it goes.

So definitely, in this journey, you need help emotionally with someone to just sit down and listen. As women, we often don't want anyone to solve the problem, because we're really good at that. But we do want people to just listen and be a sounding board because, quite frankly, when I hear myself say something out loud, I can kind of problem solve it, I can kind of fish out what I'm feeling. And oftentimes, I just need someone to sit there and listen to these emotions that I have.

And then, it's simple things like meals and even coming to visit or laundry, those kinds of wonderful things. People often assume that you would ask if you really need help or everything's so busy, you don't have time to answer the phone or for them to visit or that you have it all together. And absolutely, no one has it all together. Food is always welcome and a friendly chat is always needed.

I also needed more, and this goes back to what I said to the first question and I think everyone feels this way, I needed more information from our medical team. And then I also needed more communication between the various specialties and then that communication to also overflow to me because I wanted to know, and I still want to know everything that's going on, whether I understand it or not. I can always, you know, seek that clarification.

And I quite frankly needed a lot less thrown at me really early in the morning. I remember my first morning in the hospital with my son, there were like 7:00 AM rounds with a half dozen white coats staring at me with the most, I mean, quite frankly, unsympathetic faces I've ever seen. And I had a conversation with them about it the next day when I was kind of more in my own head. I was like, "Guys, a little less gloom and doom the next time you come in my room would be stellar," because you know, you feed off of the environment that is brought into you. And so, as a medical professional, if you walk into a room and they just got admitted the night before, and you can tell nobody got rest, let's definitely pick up the mood a little bit, no matter what the situation is because those moms and dads and those patients feed off of you and they read what you're bringing to the room.

Dr. Carlos Torres: There are two things that you said there that I think are so important. And I really want to highlight them. Let me ask a question first. So when you did come back to the team and you discussed these issue of communication and presentation, really, you know, less doom and gloom, not so much so quick, how did they respond to that?

Anna Beeman: Within a few hours that next morning, I had a patient advocate in my room. I had an advocate in the room. I had a lot of things. So they understood what I was saying. They sensed that I was overwhelmed and they showed up. It was about 24 hours later than I needed it, but I understand that's how it goes sometimes. So I've always applauded them in that response because they did show up. And within a few hours, I had people coming and trying to listen and understand what we needed, because that was what I said. So oftentimes you just have to say, "Hey, that was overwhelming and this is what I need." And I think that's so important when you're in that environment. There are a lot of resources available like you, Dr. Torres. And just as that patient's advocate, as that child's parents, you need to say, "Wait, I need something. Can you provide it?"

Dr. Carlos Torres: Though the first thing that I really wanted to highlight was that at times though these medical professionals are incredibly competent and come in with expertise, they miss the mark in terms of how to best communicate. And, you know, they're humans too with other things on their mind. And that can feel unfortunate and it's sometimes very troubling.

But the second thing that I really wanted to highlight, which is what you did, and it sounds like you did so beautifully, you advocated for yourself. You reached out and you said, "Hey, hold on. Here's what I need." And I appreciate that you maybe spared some of the messy details, but the point you were trying to make that's so important to highlight is that, because you advocated for yourself, there were supports that came in to try to best offer you what you needed through the patient advocate, maybe somebody like me, a mental health professional, or some other just family support. And in working together collaboratively, some changes were able to be made. It's unfortunate to hear that was your experience, but it's so wonderful and hopeful to be left with that change was possible and improvements were made. Thank you for sharing that.

Erin, I've got the same question for you. What do you think you struggled with in terms of needs and how to get them while you were on this journey?

Erin Lewis: I have to say thankfully we have a really great team for my child and I understood what was going on and we had great communication. So for me, my struggle echoes Anna with the emotional side. People eventually stopped checking in because they thought we had it covered. My daughter is nine now, she's older, and the journey continues. But because we've been on it for so long, people, I guess they think this is normal for them. You know, they're fine. And you as a mom and then especially if you have other children, yes, it is our normal, but it's still hard sometimes. And even, as Anna said before, having someone just to listen. They don't need to fix anything. You know, sometimes you need to talk and it's important now, especially, this far out, I know it's important to have the support system, especially if you can find people that are on the same journey or close to the same journey as you are.

Dr. Carlos Torres: What I think is so important in what you're saying-- Well, there are many things or that are important, but one thing that really stands out for me is, yes, this journey has some explicit fix-it component, "We're here, because my child needs medical treatment," and that's where we're trying to fix. But beyond that, what I need is just other people being present, really witnessing what I'm going through, not trying to step in and solve it for me or to tell me what to do, but just to walk alongside with me. Yeah. Thank you for that reminder for everybody. That's such an important thing. We all need to feel seen and understood. So both of you have had some time out from when your child was hospitalized. And so Anna, as you look back, what do you wish that you knew then that you know now?

Anna Beeman: Well, my child has really pushed this issue for me. He's four and a half. And something that's really come to light just in the last year or so is emotional safety for him and even for me. And that's something that I wish I would've had a better grasp on, even when he was an infant or age one, understanding that emotional safety, because medical trauma is very real in children like ours. And one negative interaction in a clinician's room or in an ER can resonate with that child and stick with that child for many years to come, and it can cause a lot of problems for basic things like a dental checkup or even a flu shot.

Like I said, he kind of forced my hand in that his actions and his behavior made me sit down and say, "Okay, how can we make sure that we're having as many positive experiences medically as we are negative? And we're making sure that we're ending visits in a positive way." Laying down is a trigger for him. So I'm taking a moment and saying, "Hold on, doctor. If you can examine him without laying him down, he will be a happier patient and you will get things done better." And I think when we were in the thick of it at the beginning of this journey, it was very much a do-it-now-and-worry-about-the-consequences-later, which has had a negative effect on us. So I wish that I could go back and educate myself on his emotional safety so that I could focus on it, give it the necessary respect and the time that it needed when things were happening and say, "Hold on, let's give him five minutes to breathe before we try and stick him again, because he's such a difficult lab draw."

Just taking that awareness of emotional safety, if I could go back and apply it to the beginning, I think we'd be in a much better place. And that's really just become my soapbox recently. So, I want to encourage parents who are maybe on the beginning of the journey, take a minute. And even if your child is a newborn or, you know, 18 months old, see what stresses them out and do your best. And in emergent situations, some things can't be avoided and I get that. But you know, you can always take a minute and say, "Let's take a breath. Let's give him or her a minute. Let's see if we can distract." child Life is such a wonderful resource. Again, that's going back to, what did I wish I knew, I wish I knew, again, more about those resources available to me. Child life is a great one. They can help with that emotional safety. So that's what I wish I knew if I could start over. I don't want to start over again, but if I did, these would be great things to know.

Dr. Carlos Torres: Yeah. And what I really appreciate that you're doing here is you're weaving together some of the themes that we've discussed and put them directly in terms of the child. All parents want to advocate and they need to advocate for themselves, but ultimately they're trying to advocate for their child. But one way to do that in the same way that we want to be seen and understood, our child needs the same. And we're one of the best advocates for that, by doing that ourselves as the parent of the child in the room with the child, really attuning to how our child is responding, where they are emotionally and how we create that safe space. And I love that you use that word safety. That's so important, that safe space that acknowledges what they're feeling and responds to it in a kind, compassionate way. What a beautiful reminder for all of us parents, but the providers as well.

Anna Beeman: His emotional safety is my emotional safety, for sure. So the two go hand in hand. And if he feels emotionally safe, I feel like I'm doing a good job and vice versa.

Dr. Carlos Torres: And that it's our role as providers to accommodate that space and facilitate that space. Yeah, thank you for that. I also really like that you offered some advice to parents that are just beginning their journey to really consider that emotional safety. So, Erin, I want to turn it to you and kind of do the same thing. I want to ask you looking back what you wish you then that you know now, and maybe also give you some space to offer some parents some advice as well.

Erin Lewis: For me, I echo especially Anna's thoughts on you are your child's best advocate and you know your child the best. And just reminding parents that they are a part of the team because that's your child. A lot of times you often start feeling like, you know, maybe they know better and often they do, but it's still a conversation that often needs to be held about things like the emotional safety aspect. I know personally we've had that conversation before. And thankfully, everyone has been very positive about that and willing to listen to me. But you have to be that advocate. And sometimes, it's hard as a new parent or one that is starting this journey to take that role. You can feel intimidated, but you have to know, and eventually you do discover that you have a voice and you need to use it.

I would say a second part, if I could add, for me, I truly wish I had gotten a mental health therapist way sooner than I had. The trauma of having a child in and out of the hospital and numerous surgeries, it begins to weigh on you. You think, you know, or I thought I could just keep calm, carry on, keep going, trying to do everything. But eventually, you need a safe spot and someone that you can talk to that's just there to listen. And sometimes that needs to be a therapist that can't always be a friend or family member.

Dr. Carlos Torres: Well, thank you so much for that plug for people like me. The mission that I have in the hospital at Le Bonheur being a presence that can help facilitate that kind of space, exactly for the reasons that you mentioned, that sometimes it's nice having somebody who doesn't share all this history with us because sometimes that history makes it hard to talk about other things or just the benefit of having a fresh pair of eyes and ears and a fresh heart to listen to that story and offer a particular kind of presence along with that. So, yeah, thank you for speaking out to parents' mental health needs as well. What do you think you'd want to tell a parent who might feel a bit of hesitation reaching out to a mental health professional. And actually, you know, I guess, I was talking to you Erin, but I'll turn it to you as well, Anna, if you have a thought on that

Erin Lewis: For me, I did put it off I think too long. And it got to the point where my anxiety over my child being in and out of the hospital was too much. And I realized that was my point of, "Okay, I need to do something about this." And I've told many new moms starting the same kind of journey I'm on, as soon as you can, find a therapist. And it doesn't have to be face to face. There's telehealth therapists now. It's a great time. If you need therapy, there's a lot of different ways you can receive it. But you have to take care of yourself to keep taking care of your child. And I think that's the biggest thing to remember, is you have to be healthy to take care of others.

Anna Beeman: I agree with Erin. I always say you can't pour from an empty cup, whether that's self-care and taking a minute and leaving the bedside or going for a walk. I remember one of the bleakest times during the beginning of it all, I was in a city that I didn't live in and I was completely disconnected. And it was just one of those days where I literally had to leave. And I ended up in the Old Navy. So I'm not saying that's the best form of self-care, but I remember that moment standing there thinking, "No one in the store knows what's happening right now in that hospital room," but I went and I don't even know what I got, but I remember standing there thinking, "Should I be here?" But I had to walk away for a minute. My husband stayed at the bedside, so he wasn't alone. But I had to walk away. And then, we've had other moments like that, but I think just that self awareness of what you need and listening to that self-awareness can really make a difference.

Dr. Carlos Torres: Powerful words from the two of you, parents who have lived this journey. Thank you for that.

Prakash Chandran: It's been amazing for me to just listen in to this conversation. And I think my biggest takeaway is that parents are not alone and it can feel like such a lonely experience going through something like that. I can only imagine. And I really appreciate both of you, just being so candid and clear about your experiences. And I know this is going to help a lot of parents today.

You know, Dr. Torres, for you, as someone who has seen so many parents that have to cope with this type of trauma with a child in and out of the hospital, what's one thing that you wish that parents knew as they go through this journey? What is one thing, a takeaway, that you feel that they should have?

Dr. Carlos Torres: Yeah. I think all parents who love their children want to also protect them. And I think we come in with very clear understandings of what protection looks like. And so when parents are in that hospital room, witnessing their child, going through these procedures, hooked up to equipment, feeling overwhelmed by all the medical information, they don't know how to protect their child, and so they often feel like they were failing their child. And so I think coming as a psychologist to gently remind parents that their simply being there, present with their child, offering them kind words, a healing touch, just loving eyes is absolutely enough and is so important for that child. You might not be able to cure their illness, but you are helping their heart greatly.

Prakash Chandran: Well, I think that is beautiful. And I think that's the perfect place to start to close this. So thank you so much for joining me, Dr. Torres. And thank you also, Anna and Erin, for sharing your stories.

Dr. Carlos Torres: Thank you.

Erin Lewis: Thank you for having me.

Prakash Chandran: We hope that by these families sharing their stories, others will feel less alone in what can be one of the most turbulent times in one's life. For more information regarding methods to cope with trauma, you can visit Le Bonheur's website at lebonheur.org and you can search pediatric psychology using the surge mechanism on the webpage.

Thank you so much for listening and be sure to subscribe to the Peds Pod by Le Bonheur Children's Hospital on Apple Podcast, Google Podcast, or wherever you listen to your podcast. You can also check out the lebonheur.org podcast page for the entire podcast library. This has been the Peds Pod by Le Bonheur Children's Hospital. My name is Prakash Chandran. Thank you so much for listening and be well.