Ottawa, Ontario — Thursday August 4, 2022
My name is Andy and 11 years ago I became a CHEO father, and eventually, a Research Patient Family and Advisory Committee (Research PFAC) pioneer helping researchers work better with patients and families. How did that happen? Let me tell you about my son, Quinlan, and the very first Research PFAC at CHEO.
A children’s hospital is a place no prospective parent wants to spend any amount of time in. And yet, in an instant, it became my home for months and the staff my community. What we assumed was a normal pregnancy quickly turned into progressively frequent and more extensive testing. Something was unusual about this child and every test we performed gave us more questions and no answers. The ultrasounds and in utero MRI showed evidence of concerning growth patterns and the pregnancy was flagged as high risk. Numerous doctors were on-hand at the delivery and multiple life threatening physical issues were evident within minutes. My son spent the next three months in CHEO’s neonatal intensive care unit (NICU) and other units receiving life saving surgeries, being analyzed by doctors from every department. Every day I was introduced to new, serious issues with my child, which I had to relay to my wife, still recovering in the hospital.
My son is alive today because of the hard work of the medical professionals of this city. The persistence of our geneticist, Dr. Kym Boycott, helped us to move from not knowing what afflicted my son to revealing his condition to be a new genetic mutation, not inherited from either parent. While this did not lead to any sort of cure, knowing the base cause of the issue provided significant relief to my family. It was nice to finally have a name for his condition, even if it was fantastically hard to pronounce: mandibulofacial dysostosis with microcephaly (MFDM).
We now have a medically stable, happy child who looks forward to waking up each day, who does not resent his condition, and who is warmly embraced by his fellow school mates as he makes his way in this world of discovery.
Some time later, Dr. Boycott connected me with the CHEO Research Institute to present their four year strategic plan. This got me on the radar of the future Research PFAC as someone willing to speak up for children and families as it relates to research. Michelle Quinlan, the first Research PFAC leader, approached me to join this new initiative to involve patients and families in research. From the very first moments of discovering my child’s rare disease, I knew I wanted to make sure I gave back as much as I could to the research community at CHEO. If we were going to be forging so many new paths with a new rare disease, I didn’t want to let one moment of that experience be wasted. Joining the Research PFAC was an excellent way to use my son’s experiences to help a wide array of different researchers.
The Research PFAC was brand new when I joined and we were the first crop of parents, patients, and researchers to try this new approach. Being able to engage with researchers at CHEO as peers was extremely exciting. Families usually perceive a professional barrier between themselves and doctors, while there is an entire chasm between them and researchers. Researchers exist as a theoretical concept to many, never physically realised or seen. We know they exist. They must exist. They’re the same as baby pigeons. You never see them, but logic tells you they must be out there somewhere.
One thing I noticed after a year or so on the Research PFAC was how heavily dominated the team was by women. There were only two fathers on the team. There was one research project in particular that was looking at reasons for the lower involvement of fathers in their children’s special needs care. The researcher was looking for feedback on how to approach families about participating in the study. I was the only father present at the Research PFAC that night. Had I not been there, there would have only been the passionate voice of mothers explaining why fathers aren’t engaged in their children’s care. Capturing both perspectives was essential to revealing the true cause of this issue.
The prevalence of mothers on the Research PFAC speaks to a more concerning trend in medical care wherein fathers disproportionately pass off the knowledge of special needs care to the mother. If researchers are to effectively work with families, they need to know how to deal with mothers and fathers. For that to happen, we need at least one dad (preferably more than one) to be present to speak up for this unexpected minority.
Being a member of the Research PFAC was a wonderful experience. It was delightful to see researchers come in, present their work, ask questions of us, and for us to be able to answer and be heard. Researchers would often report back to us the changes they’d made to their approaches as a direct result of our feedback. This opportunity is beyond rare. It is priceless and tangibly shapes their path towards research and engaging with the patient community in a way that ultimately makes their research better and more useful for families.
If you’re thinking about joining the Research PFAC, know that as a member, you would not be a learner or an attendee, you would be a critical resource for the researchers to draw upon to bring them success in their endeavours. The greatest loss in the Research PFAC is when someone, anyone, has an opinion, and stays silent for fear of being wrong, or just not wanting to interrupt or say something out of left field. As an introvert, I had to learn to speak up during the meetings, so my unique experiences could be heard and taken into account. It might sound strange, but dads are an underrepresented demographic in healthcare. Diversity isn’t just a target; it’s an essential tool to capture all the facets of care that need to be addressed through research. If you don’t speak, you close a door that could have led to a brighter future for a child. Don’t doubt yourself. Speak up. Get involved. Your lived experience, whether it’s good or bad, is uniquely yours and immensely valuable to researchers who are dedicated to making discoveries to inspire the best life for every child and youth.
If you’re a CHEO Dad and any part of my story resonates with you, become part of the solution and find out more about the CHEO Research Institute Family Leader Program and Research PFAC by visiting the CHEO Research Institute Partner in Research page contacting Kimberley Courtney at [email protected]