Journeys of Hope Podcast - Episode Four

In the latest episode of Journeys of Hope, host Rebecca Solomon interviews the Director of Child Psychology at Blythedale Children's Hospital, William Watson, PhD, ABPP. Blythedale is New York's only dedicated post-acute pediatric brain injury unit. The journey of recovery from a traumatic brain injury is complex and deeply personal. Blythedale Children's Hospital takes pride in its unique approach to pediatric neuro-rehabilitation, combining a multidisciplinary team with a commitment to individualized care. As families navigate the ups and downs of recovery, the importance of hope, communication, and collaboration cannot be overstated. Through the stories shared in this podcast, we gain insight into the resilience of young warriors and the unwavering support of their families and caregivers. Join us as we explore how Blythedale uniquely supports children on their recovery journey.

You can also listen to this episode on Apple Podcasts, Spotify, and YouTube.

Key Takeaways:

1. Many kids come into the Hospital in a disorder of consciousness
2. There are so many different outcomes
3. Helping families maintain hope while being realistic
4. Miraculous recoveries are possible
5. Realistic goals are essential in treatment

TRANSCRIPT

Rebecca Solomon (00:05)
Hello and welcome to Journeys of Hope, a podcast inspired by the strength, resilience, and unshakable spirit of medically fragile children. Each episode, we share powerful stories of young warriors who face extraordinary health challenges alongside their families, caregivers, and medical teams. Through unwavering love, expert care, and hope, these children show us what it means not just to survive, but to thrive. My name is Rebecca Solomon, and this is Journeys of Hope. Let's begin.

this episode, we're going to dive deep into traumatic brain injuries.

At the very head of the TBI program here at Blythedale...

is our Director of Child Psychology, Will Watson. And we have the privilege of hearing from Will in this episode. Will, thank you so much for being with us today. So let's just start, share a little bit about your role as the Director of Psychology at Blythedale and what even drew you to work in pediatric neuro-rehabilitation.

William Watson (00:52)
My pleasure.

So I have sort of two roles here. One is the director of psychology where we have a team of four of us, two neuropsychologists whose role is really this brain injury population where we're connecting

injuries with the behaviors that we see. So kids thinking skills, their emotional state, their behaviors.

And then there are other psychologists on the team whose expertise is more in the areas of ⁓ behavior management and coping and adjustment to the different difficulties that kids have in.

So as the director of that team, I try to help support both this cognitive piece and then the entire hospital's behavioral and emotional needs. And then as a neuropsychologist, I also have my own patients. And so that's the role I think that we're talking more about here is the interface with the kids with traumatic and other acquired brain injuries. What drew me to neuro-rehabilitation? I've been ⁓ obsessed with this area from my childhood, really. So I was introduced to...

books by authors who do these interesting case studies on brain injuries in high school and knew from that point on that I was going to be wanting to go down this track. Rehabilitation is just a really interesting area where you get to work with patients over a long period of time and try to figure out the best way with what they're capable of and then the environment they've got and the resources that the community can provide and try to create the best outcomes.

Rebecca Solomon (02:31)
the optimism that we hear in your voice when you talk about your role and what you do day in and day out and the passion that you have. I the families and patients see that, but for anyone listening to this episode, I mean, this is really important because when someone

they sustain a TBI, their life changes forever. And so they come to Blythedale and hopefully, you know,

not knowing what to expect, we give them those tools and resources and that care that they need to kind of enter this next chapter in their life. So we know Blythedale has that long history of treating children with brain injuries, but what do think makes the hospital's approach unique, especially in this dedicated TBI

William Watson (03:10)
One of the things that I do think sets us apart from other rehab hospitals is that as time goes on, and this is probably a trend in the field beyond Blythedale but I think as time goes on, we're taking more patients with more medical complexity and we're taking them earlier than we used to. And so we're contending with kids who are very medically fragile in a lot of ways while we're also trying to give them rehab and take care of their brain injury.

So we're seeing kids a lot sicker and a lot earlier. So I think that's one of the areas Blythedale sort of sets ourselves apart.

Rebecca Solomon (03:44)
and then in return, how does that benefit the patient?

William Watson (03:49)
Well, I think they benefit because they're getting into rehab sooner. I don't know that we have a lot of clear evidence that their outcomes necessarily are better by coming to rehab faster, but theoretically, I think that makes sense.

Rebecca Solomon (04:03)
Absolutely, right? I mean, paint a picture for us, right? What does a typical day look like for your team working with these children recovering from brain injuries?

William Watson (04:13)
Yeah, I don't think of myself as the owner of the team, but I do think we have a really strong brain injury team here.

brains control everything, right? So brains control our ability to move, they control our ability to talk, our ability to swallow, ⁓ all of these different aspects, our ability to remember. And so no one expertise on the team.

is gonna be enough to help a patient with a brain injury. And so for this reason, you've gotta have all these different disciplines coming together. You have to have medical doctors to deal with how the brain controls all of your body, your systems, your bowel and bladder and eating and everything. You have to have speech therapists who are looking at your swallow and your communication and occupational physical therapists looking at movement and positioning.

and neuropsychologists who are looking at your thinking skills. And we're all constantly, one, doing our little piece, but then in order for it to go well, we have to know what the other people are doing. And then we have to sort of incorporate some of their stuff into our stuff. We have to bring our two minds together, or three or four multiple minds to the table to really figure out the best ways to progress past some different barriers that we might encounter.

Rebecca Solomon (05:29)
And not only that, but one patient's TBI is going to look a lot different than another patient's TBI. So it's one treatment plan doesn't fit all.

William Watson (05:38)
Yeah, definitely. we, so we talk a lot, we use the term traumatic brain injury and I think TBI gets used as this broad category, but really we're thinking more, there's a lot of different types of brain injuries that we'll see. And we, the patients that we get here at Blythedale are sort of in equal categories, traumatic, so things like car accidents, kids getting on scooters, we're having a lot of subway surfers recently.

But then we also get other kinds of acquired brain injuries. Kids whose brains go without oxygen for one reason or another. Maybe they have a cardiac issue that their heart stopped or there was a near drowning or choking experience. Kids who have strokes, kids who have tumors, ⁓ any kinds of infections in the brain. All of these are different sort of flavors of brain injuries that kids can get. They each have sort of a profile that looks similar within the category, but even among those categories you have individual variability.

Our team has to come in day one and sort of figure out, like using the records that we get, day one assessments, sort of figure out what we're dealing with. ⁓ We also, I think one of the things that also sets us apart is at Blythedale is that we will take kids who are at the very earliest stages of recovery. And what I mean by that is what we call a disorder of consciousness. So we'll take kids who are still just waking up from very severe brain injuries. So you think about things like the terms like coma.

where kids may not respond at all. We don't take kids in coma, but as soon as they start to have a sleep-wake cycle and are at least responding a little bit to their environment, then we start to try to work with these kids, try to get their bodies in good condition, and try to track their responses to different things as

progress. And then kids might also come in a little bit higher, but still be very confused about what's going on around them, not being able to remember from...

hour to hour, minute to minute, what's going on and why, and they can also be very agitated because of that. So we have to be prepared for that set of symptoms. And then we also have kids at the higher end of the spectrum who still have maybe some mobility issues, but are also cognitively not able to go back to their school program for whatever reason, because they can't learn in the same way, or maybe their language is affected very severely. And so we have unique approaches that we'll take for each of these different ⁓ types of profiles so that we can help all the different range of.

kids with brain injury.

Rebecca Solomon (08:00)
It's just so fascinating and so complex because the brain, as you said, it's not just dealing with feeding and it's not just dealing with walking and it's not just dealing with all of the above. So you're dealing with those emotional and psychological developments and you're dealing with the physical and cognitive symptoms. mean, they're really, you're overseeing so much and the family and the patient, they're

basically putting everything into your hands and into your heart and into your brain, ⁓ What kind of pressure is that like for you day in and day out? mean, I know you're the pro, you know, so for you this is your job, but it seems so overwhelming and intimidating.

William Watson (08:46)
Yeah, I mean, I again would sort of point to and say I am one member of a interdisciplinary team. And so they're not just putting them in my hands. I don't think of it as my team. I'm a member of a team that I'm not necessarily in charge of, but we all have this huge stake in it. And because we all bring one, our expertise to the table, but then we also all kind of can come together and create these plans that work for people. think having these different professions who are able to sit at the table.

and each bring their own expertise. You kind of feel like, wow, there's so much I don't know about what to recommend for this particular case, but I can bring my piece and I know that the other members of the team are going to bring their pieces and we're able to communicate that well. can bring in the family's own perspective and their goals and their culture and their setting at home and what they are looking for to go back to. We can land on

Collectively usually something that everybody agrees is like, alright, this is the plan. Let's do it

Rebecca Solomon (09:49)
I think that's a good segway into Blythedale's multidisciplinary collaboration, right? We know we have that at the hospital and it's something so special and powerful. How can the team work between the doctors and the therapists and the caregivers and parents making for that meaningful difference in a child's recovery?

William Watson (10:07)
It's a great question and like I said, it can't be done unless you accomplish this. So we're always working on ways to get better at this. think ⁓ communication is a huge piece of it and then just getting the right expertise in the building at the table and giving them an opportunity to talk to each other. I think we have really top of the line people in these different disciplines and when we're able to bring our piece to the table then we...

I don't know, it goes pretty well. We all know we've been doing it for a little while and we have some idea of what the other disciplines need to know and how we can help bring our expertise to help them improve what they're doing. So I'll give you an example. As a neuropsychologist, my expertise might be different ways that a kid pays attention and learns and maybe understands language. And the speech therapist will help us with that communication piece. And maybe there's a physical therapist who's working on training in some new skill. Like maybe it's a

kid who was walking before who's now having to navigate being in a wheelchair and they're really impulsive and they are having a hard time learning. And maybe they're also like upset about the fact that they can't walk and they forget, right? So now you've got all these different problems that are leading to this kid struggling to learn this new skill that we need. So we bring together the expertise of the psychologists who know about the kids coping and help them learn ways to calm down. We bring the expertise of the neuropsychologists who can talk about their best ways of learning and

The speech therapist can talk about how they communicate and then with the physical therapist's help, we can see how we can fit all of that into teaching them how to navigate this new mobility technique.

Rebecca Solomon (11:43)
And you talk about the lessons of coping and families too. mean, parents, is, again, this is a new journey for them in the event of a brain injury. You see, I'm sure, day in and day out the concerns and frustrations of your very own patients. But what about the parents? How do you help the parents cope with the reality of a brain injury?

William Watson (12:05)
it's a tough question and it's one that we're always trying to hit the right spot with various parents and their own reactions. So depending on the severity of the injury, that conversation might be very different. Some of the milder injuries, it's obviously an easier conversation. We have a little bit easier way of helping parents to know what to expect with milder injuries. There's more limited range of potential outcomes for them.

We're only tweaking their vision of what they thought the future would be like by a little bit. But when we get kids at the more severe end who have a disorder of consciousness, we really can't tell them whether or not, ⁓ to what extent their kid is going to recover. We have many kids who come in in a disorder of consciousness and they leave in a disorder of consciousness. And then we have many other kids who come in a disorder of consciousness and they make miraculous recovery and walk out of the building. And we have every...

outcome in between that as a possibility. And so when you have a patient come to you and you try to help them maintain that hope while also being very realistic about the goals of the program and what we really can promise, it's a really delicate balance.

Rebecca Solomon (13:19)
you have any examples you can share, specific examples on how you help the children adjust to changes in the personality and their mood or cognition that follow a brain injury?

William Watson (13:30)
lot of moving targets. So we had a kid who was with us recently who had an infection in her brain. So she was a pre-teen, let's say, when this happened to her and was typically developing before this and then really was devastated by this injury to where she was not aware of where she was and...

a lot of medical treatments and she got back to the point where she was at least sort of like able to functionally navigate her environment. She knew who her people were and usually the expectations of different environments, but a lot of what she was doing was sort of like automatic behaviors or kind of be trained in very simple things and she couldn't communicate verbally. And so her speech therapist team got really good with her about using a assistive device.

where she could touch on pictures and it would help people understand what she was asking for. She got really good at expressing her wants and needs. And so in the early phases, her parents were obviously devastated. Her whole family was not sure what was going to happen. And then we had this breakthrough where she got to where she was communicating with this device. And her parents were over the moon and they were very happy. And her family, she seemed happy. And we were doing our best to sort of progress as much as we could. And then...

Somehow her brain continued to heal and the connections on communication came back and now she's talking fluidly. She still has a lot of, there's still some language deficits, there's still some cognitive deficits. She's still working on getting back to reading. But we had adjusted from, we had tried to help the family deal with maybe she does come out of this, maybe she doesn't. Then she came out and was communicating in a new way and they were super excited about that. And then we hit a new milestone and we're...

the goals now, we moved the goalposts on everything, and we're seeing like, can she get back even into a regular classroom? Like nothing's off the table for this kid at this point. ⁓ And just each step of the way, we're sort of readjusting what expectations could be there. And the families are on this roller coaster this whole while, like trying to accept like, wow, my kid might never really be reactive to me. And then just like really happy that she's at least playing games.

Rebecca Solomon (15:40)
unbelievable.

William Watson (15:47)
And now she's like telling them her feelings and talking about her day and they just couldn't be more excited. So they've sort of adjusted to where she's exceeding their expectations, even though this, before this happened, you know, they had even higher hopes for her, but now she's already exceeding what they had readjusted her expectations to. So we're just trying to be on this journey with them and trying to continue to make as many gains as we can and help them as a system.

kind of figure out how the whole thing works together as a family system.

Rebecca Solomon (16:19)
And I'm sure it's so meaningful for you at the end of the day when you see those strides in the work that you and your team are doing.

William Watson (16:28)
Yeah, know, brain injuries are funny because there is like, we do deserve a little bit of credit. I will pat ourselves on the back. We do some cool work. But at the same time, ⁓ a lot of that story that I just told you was just like the miracle of how the brain can heal. So we try to provide these like as best as we can, give them medical care and make sure that they're getting the best treatments. Then we try to do our best to fit them in their environment.

Rebecca Solomon (16:34)
You do, I would say so.

William Watson (16:54)
Each of these little steps along the way, you don't know what you can totally expect or what you can affect, and you do your best in each one. And then when they make these huge breakthroughs, you know that that's just kind of like, wow, the brain is insanely complex. None of us could have foreseen that, but let's keep pushing and see how far we can take this.

Rebecca Solomon (17:13)
Looking ahead, are there any advances in brain injury psychology or research areas that excite you the most?

William Watson (17:21)
A couple of things that we're doing here at Blythedale, So I mentioned that we take a lot of kids with disorders of consciousness and we collaborate with some researchers out of Cornell who specifically Dr. Sudhin Shah, who does EEGs to look at. for a kid who, again, this disorder of consciousness is a stage where kids with the most severe injuries are still very early in their recovery and they're limited in how much they can show us.

through their responses to their environment. So we're just really checking, are they seeing different things in their environment? Can they track a visual stimulus from side to side? Or do they respond to loud noises?

when I pinch their finger, what do they do with their arms? And so we're just really trying to see the most basic functions of the human body. And then we use that to sort of determine how severe they are and if they're showing more and more over time.

It's a really tricky diagnosis because you're very limited in how much you can really tell about what they actually understand. So many times, maybe most of the time even, when a child doesn't respond to something you ask for them, it's because maybe their brain isn't capable of doing that. But it's also possible that they totally understand what you said, they just can't get their body to do the thing you asked for.

So you ask a child to move their arm, they don't move their arm. Maybe that's because their brain is not recovered to where they know what you're even asking. But it could also be because their motor system is damaged while cognitively they may actually understand at some level. And so that gets really tricky because we're just so limited by what we observe in order to interpret how severe their injury is. And so a lot of the field, especially in adults, they're more advanced than the pediatric world. In the adult world, it's a plastic

practice standard that for patients in disorders of consciousness that they corroborate these bedside behavioral exams with some neuroimaging techniques. So can we take a glimpse inside the brain to see what's happening in there? Even though I can't see with my eyes that you're moving your arm, can I look inside your brain and see any evidence that you understood what I said? So Dr. Sudhin Shah is collaborating with us to create techniques to do this in.

kids and we've had some really promising preliminary results where we are able to see for some kids some evidence on their EEGs, which is like their electric activity that's happening inside their brain. We're getting preliminary results that are showing that we can see some evidence that they may be understanding language and maybe even able to respond to a command on how their brain responds even though their arm might not respond.

Rebecca Solomon (20:07)
unbelievable.

William Watson (20:07)
so that's something that we've

published a few papers on and we're continuing to try to pursue grants to try to bring up the pediatric literature to the level of adults where this can become a practice standard for the kids as well so that we corroborate our bedside exams with these neuroimaging techniques.

Rebecca Solomon (20:24)
And is that something that you share with other medical outlets around the world, around the country, or it's really focused first right here at

Health?

William Watson (20:32)
we're at the pilot level. We published a few papers from kids at Blythedale and some other outside patients that they've gathered specifically in the lab at Cornell that they've met with. And then we're pursuing grants that are looking at multi-site sort of studies to take it to that next level to really demonstrate whether this is both feasible and valid as a tool to use for this purpose.

Rebecca Solomon (20:55)
When do you sleep?

William Watson (20:57)
Yeah, mean, a lot of this again is a collaboration. I'm sort of the boots on the ground clinical person who helps connect the patients, but then ⁓ credit to Dr. Sudhin Shah lab for doing a lot of heavy lifting on the research end of.

Rebecca Solomon (21:13)
I'm so thankful for all of that. I have one more question that I do want to ask you. I like to ask our guests on this podcast, but before I get to that question, is there anything else you want to add? You have the open platform.

William Watson (21:28)
No, I mean, this is really, it's such a cool field and Blythedale gives like an opportunity for this, the mix of professionals to come together. So I think like

brings me to it as a professional is that collaboration. And then as the families and patients that I work with, they're like another member of the team where it's like, I don't know what they're gonna bring to the table. Parents have different expectations and different.

desires and kids are going back to different environments and really trying to fit what we do to what that specific family who has their own culture and their own priorities which are totally different than mine almost always and so we have to figure out what those are and we're like okay we can we're we see your vision let's let's try to help get you there. So this is really just like the most exciting field in a in setting that really lets us do good work in it.

Rebecca Solomon (22:25)
And it's almost like you're learning from the patients and from the families as well.

William Watson (22:30)
⁓ 100%, at least as much as they learned from me.

Rebecca Solomon (22:32)
Unbelievable. Well, we know how closely you've worked with families and, you know, as we continue to grow this podcast, we look forward to having you back on because we want to continue to take a look into TBIs here at Blythedale but also, you know, bring in some of our families and some of our former patients.

we wanna make sure we get you back on this podcast because there is so much more to talk about. But I do have one more question I wanna ask you. In a Blythedale family's journey, how would you describe the meaning of hope?

William Watson (23:04)
⁓ Yeah, the meaning of hope, I think it evolves

for families as they go through this process and maybe differs for different families depending on how it goes. But I think that, I hope that the way that that meaning of hope evolves for people is that they see that the system that they had and the things that they...

really loved about their lives before this traumatic event happened to them, that it may look very different than the way that it did before. And there will be losses and there will be connections that are different. that the, and honestly there are some tragedies where this can occur, but ⁓ to a large degree, this rehab process is going to reconfigure that. But that outcome will look very different than the one that you started with.

And it may not be what you thought you wanted, but I think in many cases, it gets back to a state that works and gets back to a state that in some cases, you see strengths where you didn't know they were before. You see that you're ⁓ stronger in some other ways. I don't want to, you know, brush over the really hard journeys that some families have and the real serious losses that our most severe patients have.

But for many of our families through this process, it's probably gonna look very different than you thought. But I think there's hope that you'll get back to a new equilibrium that

maybe sometimes even leaves you stronger.

Rebecca Solomon (24:39)
I love that because at the end of the day, it's still the same person and they deserve that. wonderful, Will. Thank you so much. We are definitely going to have you back on because we do have much more to get to on this topic so much really. And we want to hear from our

William Watson (24:47)
Yeah, my pleasure.

Definitely.

Rebecca Solomon (24:54)
viewers and listeners. If you have any future topic ideas for Journeys of Hope, we'd love to hear from you. Podcast at blythedale.org Let us know your ideas.

we hope to see you all again soon. Thanks so much.