Dr. Paige Church, the Fraser Mustard Lecture speaker at the 2021 Kids Brain Health Network conference, truly embodies Dr. Mustard’s commitment to making education accessible to all and fighting for more positive neurodevelopmental outcomes in children. She is a developmental pediatrician and researcher at the spina bifida clinic at Holland Bloorview Kids Rehabilitation Hospital, and the director of the neonatal follow-up clinic at Sunnybrook Health Sciences in Toronto.
We spoke to Dr. Church to learn more about her research and what she’s looking forward to at the conference.
On top of being a medical doctor and seeing patients, you also conduct research. What is your research focus and how does it align with the KBHN mission?
Most of my research has two arms. One is “overview surveillance,”–which is looking at children who are deemed to have a greater chance of having a childhood disability, mainly premature infants in the ICU and/or children with spina bifida, and then doing surveillance on their outcomes and looking for patterns.
For example, if we see a blip where more children are experiencing hearing impairments or more children are having significant visual impairments, we look back at our practice to see what we’ve done differently. Have we been using a drug more? Have we been doing some practice differently? And does that account for why we’re seeing this change?
The other part of the research is looking at how healthcare systems work for people who have special needs or disabilities, and then looking for ways to make it different or better.
Right now, we’re doing a research project on a small intervention in the ICU, seeing what impact it has on the parents and if that make them feel more empowered and more independent. One is an upstream intervention, and one is more looking at the system and trying to identify where there are gaps or things that need to be better, which aligns well with KBHN’s mission.
You recently revealed that you have spina bifida. How has this impacted your work and how has it uniquely situated you to care for your patients?
Growing up, my dad was a doctor, so I was an “enhanced” patient because I had a bridge that kept me from having unnecessary complications, having access to care that wasn’t obviously available. What I’ve realized is that not everyone has these chances. Many of my friends had cerebral palsy. I didn’t see them as “different”. They were smart and had cool bikes. But medicine often makes disabling conditions synonymous with “bad,” and that’s just not true.
Also, doctors often tell parents all the things that their child won’t be able to do. I want to turn that conversation around to be more empowering to the patient. People with disabilities are just like us—they have stories, and they have imperfections, and they have strengths and perfections—but there are intolerances in our medical language and that is worrisome.
My background has forged my fire, and I hope that one day we see that individuals have unique needs that may allow them to contribute to the medical system in was that are richer and equally powerful.
What are you planning on discussing at the upcoming conference, and what do you hope people take away from your talk?
The “air” of medicine can be very ableist, and so I want to have an honest conversation about how this infiltrates interactions with patients and how you shape realities with your words. It’s about how we introduce concepts to families around disabilities. We can all be very close to being disabled—all it takes is one accident to be temporarily or permanently disabled—and we can all end up in that camp. So, to ignore that population feels short-sighted.
I really want people to have a positive takeaway. Medical care can help open the door to this more inclusive field, and I want people to be amazed by that magic and celebrate that magic. It can take some time—it’ll probably take a generation—but that’s really what I want to see.
Register now for the 2021 KBHN Conference, taking place virtually on Nov. 8 & 9. Learn more on the Official Conference Website.
