Caitlin Whyte (Host): Welcome to In Their Words, the podcast brought to you by UPMC in Central PA and the UPMC Pinnacle Foundation, where we share the stories, voices, and perspectives that matter most in healthcare and healing. Today's episode features Stacie James, Program Director for the UPMC Hanover Pediatric Rehabilitation Center.

In this episode, we'll get to know Stacie, her journey, her passion, and what drives her work every day. And we'll hear her perspective on our last episode, where we spoke with Katie St. Clair about her son Dominic's remarkable journey at the Pediatric Rehabilitation Center, a journey that helped him gain independence and truly transformed his life. Sit back and let's hear it in their words.

Stacie James: So back in the late '70s, I was on the course to become a CSI person. And then, I realized rather quickly than I would much rather work with people than with beakers and test tubes and that sort of thing. And so, literally, providentially, I found physical therapy. And it is a career that enables me to establish relationships with people over time and to help people achieve their goals for physical rehabilitation, following maybe an injury following surgery.

What I found in physical therapy school, when I went there in the early '80s, was that, for some reason, I found I wanted to work with children and I had not really any idea, that that would be a calling for me. Because I don't have children, I don't have biological children. It was just kind of out of the blue. And when I finished physical therapy school, my first job was with kids in a Maryland Pediatric Hospital.

And at that point, there were many, many things that were going on that we've lived through and learned from, one of which was that was the beginning of the AIDS epidemic. And it was also, quite interestingly, the resurgence of the tuberculosis, the resurrection of the tuberculosis virus. So back in the late '70s, early '80s, it was assumed that tuberculosis had been conquered. And come to find out, it hadn't. So, times were quite interesting back then. And since then, of course, we've come through many, many other viruses and issues.

But that was where it started for me back in the early '80s. So as I was working in this hospital and working with children, I realized this is more than just a career and more than just a job. It is a calling, being able to relate to individuals who don't yet know or understand that this really, really, really hard work of physical therapy is worthwhile.

So if I ask most adults and say, "Well, what are your goals? What would you like to achieve?" And maybe it's to be able to return to work. Maybe it's to be able to get back out on the golf course. Maybe it's to be able to do any number of a hundred things, thousands of things that are very meaningful to a grownup. And that's pretty straightforward.

But with little ones, it's very different. There's no reasoning with them. Well, you know, if you want that tool, you're going to have to learn how to walk and such like that. And the hard work of therapy became almost impossible to achieve. So, figuring out how to relate to child and essentially convince them that this hard work is very worthwhile, is what I learned how to do.

And at that point, I think the die was cast. I was very interested in helping little ones see the benefits of their hard work, the benefits of being able to move across the floor, painstakingly move across the floor. It might hurt. It might be very difficult, but it was so worth it. That's how I began my career cementing me as a pediatric physical therapist. I took a short course into administration and kind of moving up the ladder of healthcare. And not quickly, but eventually, after a few years realized it's not for me. I kind of had an ideal that, " Well, let's share this passion with the next generation.

And I realized that that wasn't the way to share my path with the next generation. And so, I returned, out of the admin track and up the ladder—corporate ladder, I guess—back to the day-to-day involvement in physical therapy. And when I returned, I was hired by Hanover Hospital in 1986 and, at that point, you know, worked essentially all these years for Hanover Hospital. Took a short detour into moving about the country, went to Florida, went to Arizona, came back to Pennsylvania, came back to Hanover Hospital.

And then, as we moved through the transition to become UPMC as part of a global medical system and all that, that enables us to experience the eastward movement of the Pittsburgh Children's Hospital coming eastward to the Children's Hospital of Harrisburg has been such an exciting time. For me to be able to be the forefront of that move has been very, very exciting. And so, that essentially is my story in how I became a pediatric physical therapist.

I left, I stepped away from administration. But then, returned about 13 years ago because this program, we were known as pediatric specialty therapy for a while, but this program meant so much to me, and I knew what it was doing for the children in our service area, that I didn't want it to not succeed. We had difficulties finding leadership to lead this pediatric rehab that we are now. And so, I stepped up and said, "I'll do it." And it wasn't all me. I mean, I became a coordinator. But what eventually happened was the Hanover Hospital renovated a rehab space for us at York Street. And we became pediatric specialty therapy and then pediatric rehab with the advent of our partnership in moving with UPMC.

And so, that's my story at this point, is a little bit of therapy now, but making sure that the program stays true to its roots and true to its mission, which is children and helping children achieve their goals, even the goals that they're not quite sure that they have yet. So, I hope that that answers that very broad question.

Dominic is a star. And he is someone who I met and he was pretty motivated, even at the beginning. But there were many things that were very, very challenging for him and the bottom line for Dominic in many ways was strengthening and using that strength to develop more advanced mobility that was more commensurate with his chronological age and his cognitive age. So, he had desires but was struggling to be able to achieve them because of muscle weakness and actually, you know, some muscles that just didn't work very well for him.

So, one of the things that we worked on was functional strengthening. And this is where pediatric physical therapy can be so much fun. So rather than the standard, you know, TheraBand, let's do exercises with TheraBand or a machine to strengthen your quadriceps muscles or let's do standing on one foot to strengthen, many of the things that we use here for functional strengthening are things like climbing walls and climbing big mat and jumping into crash pads and the like. These were things that Dominic hadn't experienced before. But he was also a little bit unsure of himself with his feet off the floor and basically moving vertically through space as opposed to horizontally through space. And it was a little bit a challenge to get him to see that recruiting his core to climb a mat stack, which is a stack of mats with little footholds that we create based on how much we ask him to recruit his gluteals muscles or his quadriceps muscles and the like to climb a mat stack and leave the floor was a little bit of a challenge. So, we start off slow, we go with a little bit of a lift. "Let's step up onto the surface that is only four inches above the floor." And we have adapted rock wall here with large footholds and large handholds interspersed with regular concrete hand and footholds.

And that's where we begin. We begin where the child is and not where we expect him to be in, six weeks. So, we begin where he is and show him the benefits, " Okay, all we gotta do is step up onto the lowest rung of that rock wall, that lowest foothold, and just get that toy that's just out of your reach from the floor." And over the weeks and months. I'm going to tell this story, because it's really funny at this point. So, Dominic's doing great in physical therapy. This is his first course of therapy. He's learning trust his body, to lift him off the floor and that he can actually balance when he's off the floor. And he's starting to recruit all kinds of muscles that maybe he didn't even know he had at the time.

And then, one day, his dad brings him to physical therapy and he said, "You taught him how to do this." And I'm just like, " What did I teach him? You taught him how to climb." And I said, " But I cleared it with mom first." I said, "I know this is something that we teach children to do safely. And I cleared it with mom first." And I'm just stammering. And he starts laughing and he said something like, " It's okay because he's really doing it outside of therapy." And it was so cool, but actually not cool." But anyway, it was just a couple of things I want to point out that it's just the interaction of a pediatric physical therapist, not just with a child patient, but also with family members. Do you know what I mean? Like, we are afforded the luxury of becoming close and working together as a team with this child. And also, that this really is helpful and enables children to experience and enjoy aspects of mobility and gross motor skills, running, climbing, jumping, as many other children are allowed to do.

That was our first course of therapy with Dominic. And then, he reached a whole lot of goals. He was doing great and, then he transitioned over to a course of occupational therapy, which was very beneficial for him, in helping him with his activities of daily living and continuing his strengthening of his core.

And then, probably back in, I can't remember, a couple months ago, he had surgery to repair a tethered cord, which has the unfortunate ability to overstretch. So, his spinal cord had become tethered or stuck to some scar tissue where he had had some previous surgeries. And it was causing a stretch on the spinal cord and had the potential to cause further damage to a spinal cord. So, he had surgery for that. His team caught it early, his surgical team monitoring his neurological function caught it early. And he had surgery for that.

And then, he did have a little bit of weakness after that surgery. And he's returned to physical therapy and now he's actually working on some things that lots of people didn't think he'd ever be able to accomplish and achieve including active ankle movement. His diagnosis of spina bifida that had been repaired in utero sometimes precludes the ability to strengthen varied, what we call distal muscles, the muscles of your feet and ankles. And he has been able to work on that now in physical therapy. And he's now of an age that we can say to him, "Okay. All right, go up on your toes 10 times." And I'll help him a little bit so that we can—my goal is to teach him a new motor pattern that he hasn't experienced before which is tiptoe walking or going up on his toes.

And then, to show him how that, "Well, look how high you can reach when you go up on your tip toes. And isn't this cool?" And he's given me so far an emphatic, "Yes, this is pretty cool. So, what does that do? What does the ability to point your toes do for you more than just reaching overhead?" Well, it helps you to jump, and he now loves to jump. So, he jumps down, he jumps into the crash pad. He's a very safe, young man. He knows his limits, but he loves to jump. He's jumping forward now. So now, he's developed the ability to recruit his tricep surae or gastroc soleus muscle group to propel him through space to be able to jump.

And he is beginning to be able to land with shock absorption, which is another important functional skill for children of jumping. So, that's where we are, and that is, in a nutshell, Dominic's physical therapy story with me at least. He did have some therapy, I think, earlier in life. There's quite a variety of diagnoses for physical therapy. But we also offer occupational therapy and speech therapy services here. So, the majority of the children that come to us have some type of developmental or physical difficulty or challenge? Cerebral palsy is very common. in our caseload. We work with individuals who may have sustained a brain injury surrounding a difficult birth.

There could be something relatively straightforward for physical therapy, something like torticollis, which is a very tight one side of your neck muscles. We see that quite frequently. we work with children like Dominic with spina bifida and we work with children that have a variety of diagnoses that sometimes are difficult to name or label, but just have difficulties with moving against gravity. Their muscles are weaker than they need to be. A child who is developing, typically, their gravity is their fitness gym. They're moving against gravity, their arms and legs lifting their head, pushing up on their arms during tummy time, learning how to sit, learning how to remain upright when they're held on their parents' hip and carried around the house. Those types of things just occur naturally for most children. And some children, there is no diagnosis other than a type of delay and/or muscle weakness or low muscle tone. And low muscle tone is the set in how your muscles react to gravity. But that can't be changed, but you can strengthen in the presence of low muscle tone. And that's usually our goals, strengthening and then using that strength to learn more advanced skills, like fine motor skills maybe for buttoning and toothbrushing and dressing yourself and, from a physical therapy standpoint, walking across the room and getting a snack from the snack drawer as opposed to having to ask somebody to do it for you. And from a speech language pathology perspective, the movements of the child's ability to move his tongue and oral musculature in order to produce speech and language.

We have a lot of our patients, I personally call my friends, but we have a lot our patient friends that will come in and say, " Do something that a sibling or a same age peer is able to do." And that is often goals that we set, because that is a patient-verbalized goal. So, the achievement of something that they desire to do. Sometimes it's the desire of the parents. And then, we see if we can engage that child to adopt that goal for themselves. So, that's one of the measures that we have.

We also have the measure of what are your same-age peers doing? Now, not every child that we work with will be able to achieve those goals, but to be able to achieve the things that their same-age peers are doing. But if we can help them get closer, that is also a viable measure of our effectiveness and the child's progress.

The foundation has been exceptionally generous with our patient's issues such as the financial burden of purchasing equipment that is not funded by any insurance company. That is very beneficial and necessary in so many cases for the children that we work with.

Insurance companies don't really pay for items like adapted utensils and things that make feeding yourself easier or even possible. The standard spoon is straight, and it's very hard for some of the children that we work with to be able to lift that spoon and turn their forearm to get that spoon to their mouth. And so, a curved spoon, or a curved fork are many of the products that the foundation has provided to our patients.

Another example would be a special sippy cup. So, most sippy cups don't regulate the outward flow once the child starts to use it and starts to create the suction get some fluid, some, water or apple juice. But the foundation has provided multiple children with quite pricey, flow-restricted sippy cups that have enabled children to bridge the gap between a bottle, say, and a full-fledged sippy cup with unrestricted outward flow of the liquid. And that has been extremely helpful.

Another thing that insurance companies don't cover are things like compression vests and weighted vests. And we have found, and not just us, but physical therapists and occupational therapists and speech language pathologists have found that compression will help children, self-calm and be able to orient themselves to a task at hand. In other words, it assists them in paying attention and being able to focus. You'll see things like thunder vests in for dogs that people buy around 4th of July. But I believe it began with children using compression as a means of helping them pay better attention. We've known for years that sometimes bouncing on a therapy ball or a small, bouncy seat in the classroom can help children pay better attention. And so, these items are again, not covered by insurance companies and often prohibitive in cost for our families to buy for their own.

We would like to see more staff. We have a very, very dedicated staff. But at this point, we are at our limit in terms of patients that we can help. We have a huge, beautiful facility and we can grow. And we would like to renovate the pool area that is no longer functioning, into a feeding therapy clinic, which is where we have a space right now that we've pretty much outgrown, and we would like to turn the existing space into additional treatment rooms And the pool space that isn't functioning any longer into viable treatment space. And I think that is a really, really good start. We care, we won't be able to love your child as much as you do. But we care about you and your child. Many children, the goals that are possible for them are not as grandiose as some of the other children that we work with in terms of motor skills and measurable motor skills, but we believe that everyone can move closer toward their goals. And sometimes that requires a little bit of help, like outpatient pediatric, occupational, physical, or speech therapy.

I would just like to add that the support that we have received from Hanover Hospital and from UPMC has enabled us to thrive. We have come a long way. Very early on we were, in some ways, trying to be everything to everybody. And we learned pretty quickly that the best way to help in our area is to stick with outpatient medically-based rehab services. And that we have been supported in that way through the decades. And that has honestly to become the service provider that we are today. And we would just like to continue in that same vein and potentially share our experience with others and maybe see additional facilities under the UPMC banner, throughout Central Pennsylvania.

Caitlin Whyte (Host): That's all for today's episode of In Their Words. Thank you to Stacie James for sharing her story, her insight, and her dedication to the children and families served by the UPMC Hanover Pediatric Rehabilitation Center. In Their Words is brought to you by UPMC in Central PA and the UPMC Pinnacle Foundation. If today's episode moved or inspired you, we'd love for you to help us spread the word. Please take a moment to like, rate, and review the podcast wherever you listen. It means the world to us and helps more people find these stories. Until next time, this has been In Their Words.