Melanie Cole (Host): Welcome, today we have a patient parent on with us to tell us about his experience with Shriners Hospital for Children in Portland. My guest is Mick Stevens. Mick, I’m so glad to have you with us today, please tell us your story and why did your daughter need specialized care?
Mick Stevens (Guest): Thank you, it’s great to be here. My daughter, Jillian, experienced a traumatic birth and has brain damage as a result of a lack of oxygen. So, at birth she was the only child in the NICU that was actually full term. They weren’t exactly sure what was going on, but they kind of dragged it on for a while, trying to find answers, and eventually we worked it out to where we could get Jillian home and start the process of trying to seek out specialists that would help suit her needs, and we were in Idaho at the time and that was not the place for it, and so we actually packed up and moved to California to get care at Stanford. Before we moved, the doctors there had really dark news for us, telling us things like Jillian wasn’t expected to survive, and if she did she’d have a very poor quality of life and have no independence whatsoever. So we weren’t really happy with that news and the way they broke it to us, so we kind of made the determination to prove them wrong and give her a good happy life and we started in the Bay Area with healthcare at Stanford, which is phenomenal. You know she kind of defied the odds. She didn’t have the incidents that they would’ve expected as far as injuries or illness and she was a pretty happy girl. So we took care of the quality of life and the length of her life. She’s thriving now. But a couple years ago we moved to the Portland area and luckily we found really good schools here and the school’s physical therapist was the one who initially introduced us to the idea of Shriners, and at the time I had no idea what Shriners was. So every time I saw him, he kept saying have you gotten Jillian checked out at Shriners yet? So I did get on a waiting list, and we got into to see Dr. Bower, and really after seeing Dr. Bower and getting established with care here, things just really took off in the most incredible way. They have a rehab department here that works on speech therapy, and occupational therapy, and physical therapy, and Jillian receives all three of those here, and she came to Shriners with no voice, no communication. I could read her eyes to get yes or no out of her, but that was the extent of it, and since coming to Shriners she has a very high tech communication device with a vocabulary of hundreds if not thousands of words already. She’s a little jokester, she loves telling jokes and she’s the class clown at school, and she’s just really come to life with the added communication and technology, and then just things like that added to her independence that nobody ever saw on the radar for her. And her occupational therapist set her up with a powered wheelchair, and with the power wheelchair, she uses her head switches and she can navigate wherever she wants to go instead of depending on someone else to push her around, just the amount of independence and growth that we’ve seen from Jillian in the last two year has just been absolutely incredible. It’s not anything that we ever thought would be possible for her.
Host: How old is she now Mick?
Mick: She’s 9 years old.
Host: So tell us about the providers that have helped Jillian come as far as she has.
Mick: The biggest one for us is the speech therapist because it was just a breakthrough. It was her way of showing the world – you know up until the point of coming to Shriners everyone treated her like a baby. She couldn’t speak, she couldn’t prove her cognitive abilities because of her physical ailments. So now she’s getting more and more respect as a typical 9-year-old who just happens to have physical disabilities instead of this baby who’s getting pushed around in a stroller or wheelchair. That has to be the most impactful thing that we’ve encountered so far.
Host: How would you describe the care that Jillian has received and how has that care allowed her to really grow in life?
Mick: You know we’ve been advocates for Jillian from birth, and learning how to advocate for her along the way, and we’ve always wished that there was a way for her to communicate with us, and we always knew that there was more depth to her than what you could perceive from someone who’s nonverbal and non-ambulatory, and she has just grown in so many ways. If you look back over the last 2 years, she’s a completely different person now. She has a lot more – she has much better self-esteem and she has this drive to just keep pushing herself even more. So now with physical therapy – she may never walk, but she’s making more and more advances towards doing things physically that she wasn’t capable of in the past.
Host: Tell us a little bit about the parent advisory committee. Can you explain a little bit about what that means and what you do?
Mick: It is parents with different perspectives. Their children have had different paths in life, but that has all sort of brought them to Shriners Hospital for one reason or another and because of that it gives a really broad scope of ways that you can advocate for all the different needs of kids coming to the hospital and give real life experiences from the parent’s perspective on things that are working well or things that could be improved or things that maybe we’ve seen in other locations or things to avoid from other institutes too. It’s just a bunch of parents who want to make an already awesome system work even better.
Host: What’s one of your favorite memories of Shriners Hospital Mick? What would you say to other parents that are looking at this and saying well I need that kind of help and care for my child? Tell us one of your favorite memories and what you would like to tell other parents.
Mick: You know it’s hard to pin it down to one memory. There’s definitely at least two of them that really stick out in my mind and the first one is seeing Jillian in front of an eye gaze computer and watching her light up as she’s realizing that she’s able to manipulate this communication device to speak for herself and play games. It was an instant success with her. It just drove her to actually produce results and work hard. The other thing is when we first got her down in a powered wheelchair and just watching her move 20 feet in any direction on her has just been absolutely incredible. I mean we always assumed that we would be the ones pushing her around and taking her wherever she needed to go, and now there’s this idea that you know she may not need us to do that on a day to day basis. She may be able to decide for herself where she wants to go.
Host: And what piece of advice would you give another family who’s looking for specialized orthopedic care?
Mick: Well obviously the first thing for me is telling people about Shriners Hospital in particular because we’ve had access to all these different specialist in other locations, but we’ve never had the success that we’ve had here. We’ve been in three different states and many different hospitals and locations that provide this care, but we’ve never received anything like what we’ve received here and there hasn’t been even a small fraction of the success that we’ve had.
Host: Thank you so much Mick for joining us today. Do you have any final thoughts, anything you’d like to add to tell the folks at Shriners how you really feel about how they’ve cared for Jillian?
Mick: For the staff and all the therapists and everything, I can’t thank them enough and I hope they continue what they’re doing because it’s life changing. I can’t imagine how many families are coming through the doors of Shriners and having this impact and it spills out into our homes and the whole community. I have a kid who’s now the popular kid in school and she’s the class clown and nobody could’ve ever predicted that, especially early on in the early days when we got the bad news saying how she wouldn’t have independence and she’d have a poor quality of life and we’ve just kind of blown all that out of the water. It’s just something the families have to push for and know that they can get.
Host: Thank you so much Mick for joining us today. For more information, you can go to portlandshrinershospital.org. I’m Melanie Cole, thanks so much for joining us.
