Caitlin Whyte (Host): Welcome to in Their Words, a podcast from the UPMC Pinnacle Foundation and UPMC in Central PA, where we share the real stories behind the care you make possible. At the UPMC Hanover Pediatric Rehabilitation Center, progress is not just measured in milestones. It is seen in growing confidence, increasing strength, and the moments that surprise families the most.

In this episode, we hear from Katie St. Clair, mother of Dominic, as she shares his journey living with spina bifida and the role pediatric rehabilitation played in helping him discover what his body is capable of. Through physical and occupational therapy, Dominic built independence, confidence, and a sense of joy that continues to inspire everyone around him.

This is a story about resilience, progress, and a young boy whose spirit leaves a lasting impact on everyone he meets.

Katherine St. Clair: When he was first diagnosed, it was through lab work at the Hanover OB-GYN. And that's where we had the ultrasound done initially, that they knew right there at that 19-week scan that we had that he had spina bifida just by the ultrasound.

From there, we talked to the genetic provider there. And that's how we got hooked up with CHOP. And about a week later, I had to go for another ultrasound in maternal-fetal medicine. He has been provided care since then through CHOP. There are times that CHOP has come to us and said, you know, "You have to get an MRI done. You have to get lab work done. Try to do it local." He had to get an MRI done and he usually gets these MRIs done about every six months, sometimes yearly. And I reached out to Harrisburg to see if he could get the MRI. And they said, "No, we can't accommodate Dominic here because he has a shunt." And since the shunt was placed at CHOP, they did not feel safe for Dominic to have the MRI done in Harrisburg because protocol is—and this is everywhere—that when you have a brain shunt, after an MRI, they have to check the shunt to make sure that the magnet did not move the shunt and that it's working properly.

So, it is very standard. He's safe to go into an MRI unit, but this has to be done. And Harrisburg told us that he is unable to have this exam done because we would have to go back to CHOP to get the shunt checked. So, I said, "Well, that defeats the purpose of doing it from home, locally. So, I went back to CHOP. And they're like, "That's funny." They're like, "Very rarely does that happen, but most people are able to get their MRIs done locally even though the shunts were placed at CHOP." So, we've just hit some roadblocks along the way. So, we have tried to do things more locally, but we have been unable to because most of his care has been already established at CHOP.

So yeah, if anything, I would love to be able to create more services here for kids like Dominic. There's so many kids who are like him. And, you know, being in the imaging department, I wish that there are things that we could do more for local families so that they don't have to travel as far. At that time, my husband was unemployed. And our biggest focus was making sure we were doing what was best for our child, but we also have another child. And we knew, we were just like, "Oh my gosh, if we do this, we're relocating our family." We knew that we were going to have to leave, because it was during COVID, we were going to have to separate from our child for at least three months, at the least three months. This could be months that we're away from her. And with him being unemployed, we were frustrated. We're like, "Well, what do we do? Are we making the best decision?" Where now taking me away from my job for a period of time. And knowing that I wasn't getting a lot of money and knowing that we were going to have to really rely on our family and our community to help us.

And luckily, we have a wonderful support system that just stepped up and said, "You do what you need to do and we will help you." Not everyone has that. So, we knew that it was a great option for us because we had that support, but it took time. For us to go forth and get this surgery, I had to go through a lot of checks and exams. I had to see a cardiologist. I had to go through, even for a mental status, like to make sure that I was safe and able to do this because I was going to be on bed rest for a really long period of time. And they wanted make sure that mentally I was capable to handle all of this.

So when we found out that we were eligible for the surgery, it was at 3:00 PM on Friday, and we were having the surgery Monday morning at 8:00 AM. So, we didn't have a lot of time to process things. It all happened so quickly, but I think it was stressful for us because we knew that we had to rely so much on our community and our family.

But we did it. Not everyone has that. So, sometimes they have to make these tough decisions and know that they might not be able to do what is best for their child because of the situation that they are in. And that's a shame, that's frustrating.

So once you have that surgery, the risk of you going into labor after the surgery is extremely high. You are able to get that surgery up to 25 weeks' gestation, and I was at 24 weeks and eight days. So, we were just making that deadline. So, you are on a strict in-the-hospital for at least a week. And then, we had to be within 30 minutes of the hospital. So, that's why we had to relocate to Philadelphia. So, I was on bedrest. It was at 25 weeks. Their goal is to get you to 37 weeks. So, I knew I was going to be on bedrest for at the most 12 weeks at that point.

I made it to 36 weeks. So, we just got there. And not everyone is able to do that. A lot of women are unable to carry that long because they run into complications. They call it a hysterectomy site, so the area where they go into the sac of the baby. Because they go in, when they do these fetal surgeries, they're touching the child. So, they go in completely, they open a little bit into the gestational sac, they're able to fix the spina bifida, the opening in the back. And it only takes an hour to get that surgery done. But once they do everything, you're on strict bedrest. I was not allowed to walk. I was not allowed to do stairs. I could do minimal walking. I don't want to say I couldn't walk, but I could minimally walk, like to go to the bathroom. But I had to be in a wheelchair if we were going anywhere long distance. We stayed at the Ronald McDonald house for 84 days in Philadelphia, and they were wonderful to us. But yeah, I was not allowed to do anything and I had to have a support person with me 24/7 so that if something happened, I had to be able to get quickly to the hospital, because the risk of delivering is very life-threatening to the mom.

Yeah, we had to be very close. You're on a lot of medication. I was on this very high dose of medication for my blood pressure, even though I didn't have a blood pressure problem. So, I was on this high dose for blood pressure that basically did not allow me to get out of bed because I felt dizzy and sick, and I could not get up because I didn't have any blood pressure issues, but they kept my blood pressure so considerably low, that it caused me to not go into labor. It basically made me be on bed rests because I just couldn't function a lot of the times. It was just like always being tired every single day. So yeah, it was a lot, but I had a great husband and support system that he would not let me do anything. It drove me nuts, to be honest.

 So, yeah, it was very different. And we're bringing home a child that had all these complications. But to everyone, he looks normal to everybody. So, yeah, it was really difficult knowing that he was going to have all these limitations and accommodations, but people might not understand that by looking at him.

So, the main thing that really affects him—and spina bifida is like a snowflake. We've met other people in our community here, that their child has gone through the same exact things, gone to the same exact doctors, had the same surgeries. But spina bifida, it affects different levels of the spine. The lower it is on the spine, the better the outcome for the child. So for Dominic, his is pretty low on his spine. It's more like the L5 level. And so, that means he has decrease in function in his bowel, his bladder, and his legs below the knee. So, that's why he's still able to walk because he had that hip function.

But he wears orthotics on a daily basis, that are from his knees down to his ankles, to his feet. He has no feeling posteriorly, so behind his legs from his hips all the way down through his feet. We get to tickle him every once in a while, but I don't really know what he feels. But yeah, he doesn't have a lot of feeling on there, so he always has to wear shoes. So if he is ever in a situation, like even at the beach, being in the sand, being out on any surfaces, he might not be able to feel that something is hot, but could be burning him. So, he always has to wear shoes. And he may be wearing a diaper for the rest of his life of some sort. He is not potty trained. He is a very strong-willed child. They do have options for him out there to be able to relieve him. So, it keeps him a little bit more confident. But he has no interest in potty training like any other four-year-old. But they do provide things that—and he has not done this yet—that we could do bowel training with him so that he will have bowel movements in the evening. It's like a cone enema that we give him an enema every night. And that he has a bowel movement in the evening, so then he is ready to go to kindergarten so that he is not having accidents for bowel movements during the day. And that helps with confidence. Kids are mean. Kids pick on kids, because they don't really understand what's going on. He takes medication to be able to control his bladder a little bit better. But like I said, he is not potty trained, so he's unable to do those things on his own.

He has a brain shunt. He was also born with hydrocephalus and Chiari malformation. The hopes of that surgery is to help prevent those things from happening. But his brain started to swell a little bit more after birth, which is a common complication from it. So, we have a shunt and he's been very, very successful with it, knock on wood. But he has been very successful. They provide enough tubing in that shunt into the abdominal area that he should be good until the age, they said, around five to eight years old. They look at changing that. But right now, he's having no complications with that.

And other than that, low tone. He might just have some issues with doing things on time. So, he was 18 months when he started to take his first steps and he had a walker when he did that. And then, at two years old, he ditched his walker and started walking independently, which was awesome. It was faster than what we thought would happen for him. But so yeah, he might have some accommodations with walking because it took him a long time to be able to walk, which means everything else took a longer period of time. You know, when he was learning how to walk and kids at that age, other kids were learning how to talk and he wasn't talking. So, he focused so much on being able to do the gross motor skills that his fine motor skills and his speech were delayed. And these are all things that are very common for a child with spina bifida

so, Children like Dominic, from birth are going into some type of therapy. Luckily in Pennsylvania, we have early intervention. And so since birth, around three months, he started with the early intervention services in Pennsylvania. And so, he was getting physical therapy, eventually transitioned into some speech therapy and occupational therapy to help with other issues. But you graduate from that at three years old. So at three years old, when he graduated from it, we requested through our provider for him to have outpatient services. And like I said, we looked at places just online. And when I found the pediatric rehab in Hanover, I'm like, "You know what? I think this place is the one." And so, we went there and initially with PT, OT and speech. We got into PT right away. OT, they were saying about three months. And speech, they said he might be on a waiting list for about a year at least.

So, we got into physical therapy because I'm a firm believer. The older he got, I realized we were doing it the way Dominic wanted it done. He was dictating this. So, we were just kind of doing one therapy at a time. So, I didn't want him to be over-therapied. So, we started with physical therapy with Stacy and did that for about three months. He was really successful with these services. When you walk in that facility, they have the climbing walls, the trapeze, they have multiple things for him to climb, and to crawl through. And the things that he did was just—it was amazing how he increased his strength every single week.

I remember when we started with Stacy, she said to us—because he was showing interest in doing things—that his feet would be leaving the ground. And he wanted to do the climbing wall. He kept asking, "What's that thing on the ceiling?" And like pointing to it. And she's like, "If we do this, you realize he's going to start climbing at home. Are you prepared for that?" I'm like, "Yeah, bring it on," right? Oh my gosh. We weren't prepared whatsoever.

But he started doing those things and getting the strength that ,one day at home, I walked into our like dining area and there he was standing on top of the table. I'm like, "Oh my gosh, how did he just like—" He's never climbed on anything. And there he was, just standing on top of the table. I'm like, "Dominic, you can't stand on the table." But at the same time, I'm like, "This isn't safe." But I'm like, "Oh my gosh. He did it. He did it." He had the confidence. He did this all by himself. So, we had to train him to say, "This is where you can safely climb." So, we started doing more parks and giving him opportunities to climb on things where he was safe, whereas it's not as safe standing on top of the table. We came back and told Stacy, that she's like, "I warned you. Like, you've left your guard down so much because he couldn't do these things." And she's like, "As soon as you give him that, 'Hey, this is how your muscles work,' he's going to test those boundaries." And he did it. He did it very quickly.

So, we did the physical therapy for three months and then transitioned into occupational therapy. And when we did that, he loved it, doing OT because it was more games. He loved working with Kristen. But he became more frustrated because those things were just harder. He didn't really have an interest in trying to hold a pen. He wanted to run, he wanted to climb. He didn't want to have to sit there and say like, "Okay, this is how I'm going to have to hold a pen. This is how I pick up things. I have to use that spoon to be able to eat." He is on the move all the time, but she got him to where we needed to. I think we were with her for about six months. And at the time, they had a student there that Dominique just—he loved her. She was younger. Kristen laughed because he was always very attached to her.

And at those moments, because two other people were in the room, I stepped back. I stopped going into his sessions because he was a lot more successful when mom wasn't standing there watching. But he graduated before Kristen and I realized that he was at that moment of graduating from there. So, Kristen and I decided—this was probably back in April—we decided Dominic's ready for a break. He's been in therapy for four years now with no breaks. And he needs that break to be able to grow and to see, like, is he doing fine without therapy? Or, in six months, are we going to need it again? It just so happens in six months, he's getting surgery, this coming September.

So yes, we're going to need therapy again. But he's also going to different classrooms. Once he goes into that preschool and that pre-K atmosphere, and then eventually going into kindergarten, he's going to need more therapy, because there's going to be new challenges that are placed in front of him that we might not be prepared for.

So, we know that the therapy sessions and Kristen and Stacy are always going to be available for us. So, whenever we're ready, we know we're ready to go back there. But speech we were able to get in at the rehab center. The reason was the wait list was so long, and we were realizing that he still wasn't talking at this point. So, I ended up going to a place, another facility in the area that was able to accommodate him. It was a different experience there. But he did graduate, he did really well. By the time we graduated from there, he was saying a lot of words and really talking. So, we were really happy with that. So, we never ended up getting speech therapy services at the Hanover Rehab Center. But that's okay. We know if we ever needed in the future that they're there for us if we do need it.

So, I work for the UPMC Hanover Imaging Department. And I'm a supervisor for this department. My expertise is in x-ray and mammography. And kind of a backstory for this, I actually got into this supervisor role slightly after Dominic was born. And I just remember in that journey of, like, feeling I need to do more. Like, I just felt like everything that we went through, I felt like I needed to be able to do more. Not necessarily for my patients, but for my team. And I just felt like there was more out there for me than what I was currently doing. And especially even working in mammography, it's very different. I can't really compare the experiences that patients go through in a breast cancer journey to what is going on with Dominic and his journey.

But I remember like shortly after he was born, there was a patient who she was getting a really difficult diagnosis. And we go through a lot of laughter and tears in the mammography department. You don't know what your day's going to be like. And I remember sitting there with her and she's like, "Have you ever gone through something like this where you just have to trust people?" And I'm like, "Yes, I have." And I briefly shared Dominic's story and she's like, "Oh my gosh." She's like, "I can't believe this, that you went through something like that. And you did, you just had to trust people." I said, "You're right. I did. And I said, "And that's what we're here to do. We're here for you to trust us, because we know what we are doing. And you have to be able to trust us. And that's hard. It's so hard. It's our job as technologists to get them to trust us, to know that we're doing the right things for you.

And so, this journey that I'm on right now and how it's connected to the rehab, it was just really awesome to be able to see the things that they do at this location that I didn't even know about. It was like a little hidden gem for UPMC in this area. And then to find out that this is like the only one in central Pennsylvania, like this is the only service for families to be able to go to. So, I feel that i've had several meetings with other departments even within UPMC, Hanover. And somehow Dominic's name always gets brought up. And we talk about his journey and what the services here is doing for us. And it's so nice to know that it's so close to home. And I have shared my journey with my patients to be able to say, you know, "This is where my son goes. And he has been very successful" to be able to help their own children or even grandchildren. And so, yeah, I feel like his journey has created more of a purpose for me as a healthcare professional as well, to be able to connect all of these things, even though they're very different to spina bifida. Yeah, I feel like I've been able to help other people throughout their journey as well.

He is, I like to say, just an awesome kid. He is always happy. I very rarely hear a complaint from him. He always has a smile on his face and you would think a child like that would have something to complain about, which even when he does, I'm like, I" take it very seriously."

I'm like, "Okay, you hardly ever complain." So, really going to focus on this. But he always was just happy. And having a daughter who's 12 years old, she has a lot of friends, who all think that Dominic's pretty cool, which is really cool to see, because then he's always hanging out with big kids and he thinks he's hot stuff.

But it's remarkable to see even the people in the community that know his story, they'll stop to talk to him. And, it's not always like. "Dominic, what's going on? Is he okay?" You know, it's more just like focusing on Dominic as a kid. And he loves to think he's part of that "i'm 15 years old and hanging out with the big kids" and he just fits right in. And he just has such an energy to him that even our friends always say like, "Dominic's mayor of this town." Because of his journey and his personality, and since he's such a fun, loving, happy kid, I feel that he has inspired a lot of people.

Caitlin Whyte (Host): Dominic's story is a powerful reminder that progress looks different for every child. And that the right care at the right time can open doors families may not have thought possible. The UPMC Hanover Pediatric Rehabilitation Center continues to help children build strength, independence, and confidence one step at a time.

And stories like Dominic's are made possible through the generosity of people who believe in supporting patients and families when they need it most. If this story moved you, we invite you to learn more and support this work at upmcpinnaclefoundation.org or visit upmc.com to learn more, because every child deserves the chance to discover what they are capable of. Until next time, this has been In Their Words.