'He takes the time to hear me'
By Louise Kinross
John Kooy (left) is an orthotist at Holland Bloorview known affectionately as “Dr. John” to some of his patients. Here’s how a couple of Holland Bloorview families describe him:
“Dr. John is always so nice to Lucas. He always has toys for Lucas to play with and shows great patience with him. He's always polite and asks Lucas if he can look at his leg and foot before holding Lucas’s foot. He really puts Lucas at ease. He's one [professional] that Lucas isn't scared of!” And from eight-year-old Jillian (centre above, with Dr. Mark Camp right): “He's amazing! He takes the time to hear me and make amazing ankle-foot orthoses!”
John is the team lead for orthotics at Holland Bloorview and collaborative practice leader for orthotics and prosthetics. He’s been with us for 16 years.
BLOOM: How did you get into this field?
John Kooy: I went to York University with the intention of getting a bachelor’s in physed and going into sports medicine. But it wasn’t what I thought it was. So I dropped out of university and worked with a private swim school. I’d been a swim instructor and life guard since I was 16 on the lake where my family had a cottage. At the same time, I started looking through school calendars at other programs and came across the prosthetic and orthotic program at George Brown College. I did a two-year technical program, a two-year clinical program and then a two-year residency. You learn prosthetics and orthotics in the program, but I chose orthotics because that’s where I got a job.
BLOOM: What is an orthotic?
John Kooy: It’s an external support commonly referred to as a brace. It’s used for improving function, correcting a deformity, or stabilizing or protecting a part of the body.
BLOOM: What’s the most common kind?
John Kooy: Ankle-foot orthoses (AFOs). They’re used by kids who have neuromuscular or musculoskeletal conditions like cerebral palsy, spina bifida, muscular dystrophy or arthrogryposis.
BLOOM: So you started out at West Park working with adults. What was it like to come here and focus on kids?
John Kooy: It was a big change, but I’d spent many summers running swimming lessons when I was younger.
BLOOM: What do you like about working with kids?
John Kooy: It’s the challenge, the passion, the fun.
BLOOM: What do you do as collaborative practice leader?
John Kooy: Help to put structures and mechanisms in place to create a collaborative environment. An example is the centralization of the electronic medical record. Prior to going with that, all of our documentation in orthotics and prosthetics was separate and hand-written.
BLOOM: How does the electronic health record improve collaboration?
John Kooy: It improves transparency and communication because you can easily refer to other clinicians’ notes and access reports from SickKids. One of the big ways it improves timely care is when a child gets admitted post-operatively from SickKids. We have easy access to the physician’s orders, so we can plan for what they need and when.
BLOOM: How many children would you see in a day?
John Kooy: Between three and five. I also see adults, so I see them through the life span.
BLOOM: How do you create orthotics?
John Kooy: It starts with an evaluation and watching them walk.
BLOOM: Then you do casting?
John Kooy: We call it shape capture now. So the client either steps onto a foam impression or we use special tape that’s wrapped around the limb and held in place until it cures. That gives us a negative impression of the limb and then we turn it into a plaster positive model.
BLOOM: That’s what you do in the white room, which is like a workshop?
John Kooy: Yes, the white messy room. We work with the model of the limb to sculpt or shape our final orthotic or prosthetic.
BLOOM: Is the white residue in the air from the plaster?
John Kooy: It's predominantly plaster. We sculpt the plaster models with various rasps and carving tools. We add and remove plaster as needed from the model to ensure proper support without putting too much pressure on bony areas, as well as defining the final shape. We then use sanding paper and screen to smooth the final finish.
BLOOM: What’s the benefit of making them on-site?
John Kooy: We can better control the process for quality and when clients need adjustments, it’s easier to do it in house.
BLOOM: What’s the greatest challenge of your work?
John Kooy: One of the greater challenges is you can’t expect a typical day. Something always happens outside our schedule—whether it’s a child in a clinic that needs to be seen for an evaluation while they’re here, or a new inpatient that’s having problems with a post-operative cast. These are things that aren’t in the schedule.
BLOOM: Are there other challenges?
John Kooy: Maintaining clear communication and understanding and inviting everyone’s perspective. Not looking at everything as a cookie-cutter scenario, but realizing that everybody has different opinions and goals and needs and wants. We may hear the opinion of the therapist or physician and then meet with the family and client and they have a different idea. So we might have to circle back and ask the therapist ‘What do you think about x?’
BLOOM: Isn’t the experience of getting fitted for orthotics frightening for some kids?
John Kooy: Anxiety is definitely a challenge.
BLOOM: What do you do to manage that?
John Kooy: Everything from getting down to their level to finding ways to engage them in the process and make things fun. For example, if I’m shape capturing with the tape, I’ll give them a pair of gloves to put on as well. We get to know them and ask about what happens outside—at school, on the weekend, or when they go on vacation. We see them over decades, easily four to five times a year, so we get to know them very well.
BLOOM: You’re very calm.
John Kooy: Calmness is something I am recognized for. Not too many things get me wound up. I’ve always said that I'd never give up my clinical work because it’s stimulating, it’s engaging and there’s value in having that perspective of being on the frontline when you’re a leader.
BLOOM: What do you love about your job?
John Kooy: The energy. The stimulation of watching the kids change as they reach various goals. They’re excited to tell you about it. Just now as I came through the second floor waiting room to come downstairs one of my families was waiting for a clinic. The client told me how great school is and his plans for the summer, and the mom said how much of an improvement she and the teachers in the school have seen in his overall function for walking, balance and movement.
BLOOM: What skills do you need to be good at making orthotics?
John Kooy: Creativity. You have to be open to ideas. Empathy. A good listener. You need to be able to visualize in 3-D. You need to be able to see that end product before it’s there.
BLOOM: Is it an art?
John Kooy: There’s definitely an art and hand skills in the fabrication side of things. I do some fabrication, but for most of it I rely on the technical team behind the scenes.
BLOOM: What’s the biggest change in orthotics since you came here?
John Kooy: How we customize the orthotics with pictures and patterns. That’s huge. The kids get to select a pattern or image. It could be a sports team or a character from movie or TV. A couple of kids who are keen artists have provided me with an image of their art work that we’ve transferred onto the orthotic.
It’s gone from ‘This is what you get, and we can put a blue pad or a pink pad in it,’ to ‘The sky is the limit, let your imagination run wild.’ My team has rarely come up with something they can’t do.
BLOOM: Why is personalizing orthotics important?
John Kooy: It allows children to express their identity. We’ll often hear kids in the school comparing what they have on their orthotics: ‘What did you put on yours?’ We did have one problem with a child who chose a skull and crossbones, which his school felt was inappropriate. We had to change that one.
BLOOM: That’s funny. Have your thoughts on disability changed over the years?
John Kooy: I don’t know that they’ve necessarily changed. I think there’s still a lot that needs to be done with access and what happens outside of here. Looking at the [physical] environment, and looking at the transition to adulthood. We see the adult population in our area, so that puts us in a unique position. As we’re evaluating change in terms of the hospital’s transition strategy, we need to be part of that conversation.
BLOOM: What happens to clients when they graduate?
John Kooy: They’re living in the real world where they can’t find a care team to really understand what they’re looking for. I wish they could be connected with someone who has the same level of understanding of their condition that they find here.
Some will advocate more for themselves, and others will drift back into that black hole and say ‘that’s the way it is.’
BLOOM: And then they develop secondary health problems. It must be frustrating for you after working with them for so long.
John Kooy: Yes. In talking about disability, it’s not what needs to happen in here. It’s ‘Wow, what more could be done beyond here?’ I try to be a listener, and help adults work through their thoughts and ideas.
We play an important social role in their life. That’s how typical days turn out not to be typical days.
BLOOM: If you could change one thing about the health system, what would it be?
John Kooy: Better funding for technology. Right now AFOs are covered under Ontario’s Assistive Devices Program, but shoe modifications, in-the-shoe orthotics and some other orthotics aren’t.
BLOOM: I know how expensive those are, and they’re often not covered under a parent’s health insurance at work. If you need a lift on your shoe because one leg is shorter than the other, or in-shoe orthotics because you walk on your ankles, those are medical, functional needs.
John Kooy: The other thing I’d like to see is a change in recognizing the types of disabilities that can receive technology. For example, autism isn’t a recognized disability to receive a custom protective helmet.
BLOOM: Is it just kids with seizures who are approved for that?
John Kooy: Yes. If we need to create a custom protective helmet for a child who self-harms, the entire process costs from $300 to over $2,000.
BLOOM: What emotions come with this job?
John Kooy: I don't think there isn't an emotion. Happiness, laughter. Sadness when you feel it's been a stressful day for a family or a child is in pain. Some of the treatments are going to elicit pain or discomfort or anxiety. A lot of the times you have to block that out, knowing that a treatment is needed and that we'll work through it together. In the end, we'll find a way, maybe not at that appointment, but at the next, to laugh about something.
BLOOM: Do you do anything to help you cope?
John Kooy: I enjoy outdoor activities like skiing, sailing, biking and hiking. I like to travel. Also, Holland Bloorview is such a great family environment among teams and across the hospital that there are always opportunities to share a story or a laugh.
Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.
