Dr. Darcy Fehlings is a senior clinician-scientist who heads Holland Bloorview’s child development program and University of Toronto’s division of developmental pediatrics, the program that trains doctors who specialize in working with children with disabilities.
Darcy has conducted groundbreaking research in the use of Botox to reduce muscle tightness in children with cerebral palsy and is the incoming president of the American Academy of Cerebral Palsy and Developmental Medicine.
One of her latest studies looks at how stationary exercise bikes and a virtual video game can motivate kids with cerebral palsy to exercise at home while having fun and making friends (see photo above). Darcy’s worked at Holland Bloorview for 25 years.
BLOOM: Why did you choose children’s rehab as a field?
Darcy Fehlings: When I was finishing medical school I was torn between whether I should go into pediatrics or psychiatry. I wanted to work with children but I liked not only the health issues, but the psychosocial aspects. I was accepted into both, but I wanted to ensure I had a strong medical training and I really liked the idea of using a holistic approach to wellness when working with children and their families. So after I did my pediatrics training I applied and got into the developmental pediatrics program.
BLOOM: Has your thinking about disability changed over the years?
Darcy Fehlings: To me the disability has become more invisible and I see the individual rather than the disability first.
BLOOM: Have you had any ‘aha’ moments?
Darcy Fehlings: One was related to my kids. I was giving a talk in the evening for parents of children with Duchenne muscular dystrophy and my husband was away, so I had to bring my three kids with me. My oldest daughter was in Grade 6 and old enough to integrate into the inpatient recreational program. This was her first exposure to really interacting with kids with disabilities and when she came out she said: ‘Mom! That was eye-opening. They’re just like any other kid.’ That was an aha-moment for me in terms of the power of integration.
BLOOM: What are some of the challenging things about this field?
Darcy Fehlings: I have to say that I absolutely love what I do. I love it. I know that some children are struggling and some families are struggling, but as a health-care professional I really value being in a position where I can hopefully intervene or help the child and family. I have a lot of empathy, but it isn’t a negative emotion. I feel like I may have a suggested solution to help the challenging situation so that a potential negative can be flipped into a positive.
There are times when, for multiple reasons, there hasn’t been that positive effect. But it’s just my personality that I’m very accepting of what the children and families bring to the table. Even if they’re not as compliant with what I’m suggesting, I don’t carry a negative feeling. I understand that they have a million things they’re trying to do, and deal with, at the same time.
Another potential challenge is keeping up with the pace of scientific discovery, particularly at a molecular or basic level. However, this can also be exciting. You can put a childhood disability lens on these discoveries and see which ones might eventually make an impact clinically for a child.
BLOOM: If you could tell parents one thing, what would it be?
Darcy Fehlings: I think families of children with cerebral palsy often get stuck in this concept of ‘I have to do these intense therapy routines’ with my child. I wish that I could help families move towards appreciating how important it is for their child to participate in fun activities and focus on wellness rather than just focusing on repetitive motor drills to try to obtain function. I think focusing on socialization and leisure is super important. Often families say ‘I wish I’d figured that out earlier.’
BLOOM: If you could give yourself advice when you first started, what would it be?
Darcy Fehlings: I did give myself advice and it was: “Push yourself really hard. Try really hard. Learn the evidence, so you can be as helpful as possible. Take it really seriously because it’s a very serious responsibility.”
BLOOM: How do you do that and balance your own life?
Darcy Fehlings: When my children were younger I worked a four-day week for many years and that was really helpful in having a work-life balance. Right now, quoting Sheryl Sandberg, I say ‘yes’ to choosing both: Leaning in to life and leaning in to work.
BLOOM: If there was something you could change about our current health system for children with disabilities, what would it be?
Darcy Fehlings: I think families would appreciate it if there was more coordination and connection between the various service and health-care providers. I’d also like Holland Bloorview to continue to develop our focus on participation and wellness. We’re leading the way in this area but I’d like to see us develop it in an even bigger way.
I’d love for our practices to become even more evidence-informed, so we’re standardizing care pathways so that not only can we do a great job at Holland Bloorview, but if another clinician is trying to provide a similar service elsewhere, they can access that information. We need to do a better job of creating evidence around the service and care we provide.
Finally, I’d like to do a better job of empowering families with good information.
BLOOM: How can we do that?
Darcy Fehlings: We need to develop an information hub that is providing relevant, understandable information to parents. It’s time intensive to create a system like this and keep it updated. We have to work together as a collective group of clinicians around the world to pull and share information so we don’t each have to create it.
BLOOM: How has your practice changed over the years?
Darcy Fehlings: I’ve always been a bit of a softy in terms of wanting to have a holistic approach to the child within the family and the family within the community. I think as I’ve progressed I’ve developed efficiencies in assessments so that it doesn’t take me four hours to have that holistic approach. I think I’m efficient in my interactions with families and can quickly get to a point where they feel like I’m being helpful.
BLOOM: How do you deliver hard news to parents?
Darcy Fehlings: I try to deal with it head on in a manner that hopefully they can hear and listen to. I try to present the information so that they’re the ones moving the decisions forward, but that I’ve presented it in a way that includes some hope, so that they don’t close off and stop listening.
BLOOM: What are your hopes for research?
Darcy Fehlings: I’m involved in two translational cerebral palsy neuroscience networks and I hope that we can make a discovery of a treatment that would help the neurologic condition of cerebral palsy. For example, we’re trying to explore how constraint therapy might stimulate stem cells that are already in the brain.
My other dream is to get our ‘exergaming’ project into children’s homes. We’d like to see research interventions move into clinical applications like this. Exergaming is where children with cerebral palsy ride a stationary bike to power a virtual game they play with each other. Youth can pedal and play together, have fun, boost their cardio fitness and decrease their sedentary behaviour.
BLOOM: What are your goals clinically?
Darcy Fehlings: I’m going to put a lot of energy into helping to develop evidence-informed pathways so that all clinicians can strive to be great. You take all of the available evidence and pair that with expert opinion to develop flow pathways for care. These are one-page pathways so clinicians who are really busy don’t have to read 40 articles—it’s been synthesized for them.
BLOOM: As a parent I would have loved to have a coach who follows me over time, to help me stay encouraged and on top of the many things I’m working on with my child. What do you think of my coach idea?
Darcy Fehlings: I really believe in continuity of care. You meet a child and family at one time, but you’re going to become a much better clinician if you follow that child over time. If you miss something you will learn that you missed it, and that will allow you to get better. It’s very important to families when they see the same team over time and can develop a relationship with them. This is where the coach idea could fit in as a lifespan perspective is very important. Some of that coaching takes place with our nurses.
BLOOM: What are you most proud of in your work here?
Darcy Fehlings: When I came here we didn’t have a ‘care-by-parent’ unit where the parent could stay in the room with the child. And we didn’t have a day program. We were a hospital. I’d like to think that I had a role in pushing those things forward 25 years ago. I really love the work I did in the neuromuscular program when it was transferred here from SickKids. I was leading this great team and we had to take it from an orthopedically-focused scoliosis management program to a holistic program.
Overall I’m proud of my efforts to integrate research and practice together to drive excellence in care.