Since publishing this article, little Raphaël has succumbed to his disease. He, alongside all the other young patients affected, is a true source of inspiration for all the researchers who continue to push boundaries to find a cure.
With the help of the families, Dr. Bernard is advancing research that helps treat and cure as many children as possible. But she needs your help.
When did you first realize you wanted to be a doctor?
When I was in cégep, my grandmother had a heart attack and my parents weren’t able to answer my questions about it. That’s when I realized I was interested in the “why” and “how” when it came to health problems in general.
If you hadn’t gone into medicine, what other career would you have chosen
As a teenager, I considered going into fashion but quickly realized that artistic endeavours were more of a hobby than a real career for me. If I hadn’t gone into medicine, I would have become a gym teacher. It’s something I seriously considered when picking my university major.
What made you choose such a specific discipline: leukodystrophies, rare neurodegenerative brain diseases?
My professional trajectory was a combination of my interests and coincidence. I felt that children suffering from rare diseases were being left behind. Also, at the start of my residency, I did a presentation on leukodystrophies, because for me, it was the only way I could really understand what they were. Then during my fellowship, I was invited to work on a new research project about leukodystrophies, which had a bit of a snowball effect. Now, I can’t imagine my life without the strong relationships I’ve developed with the families of these very sick children.
You’re a mother to three adopted children. Was there a specific reason behind this choice?
My husband and I always wanted both biological and adopted children. Since having biological children wasn’t happening naturally, we said to ourselves: “Why force nature when there are children out there who don’t have parents?” I was only 26 when we started the process of adopting our first son, which surprised a lot of people because we were so young! Then we decided to adopt again on two occasions, this time children with special needs.
If a magic genie granted you three wishes, what would they be?
World peace would certainly solve a lot of problems! So would eradicating disease. But above all, I’d say I wanted everyone to be happy, because it is possible to find happiness even in the face of disease.
What’s the most important lesson you’ve learned from working with families?
Humility, resilience and the value of human relationships. Ironically, these families helped me a lot in my personal life. I also have a child with a rare genetic disease, which was undetected at the time of adoption and remains undiagnosed. Seeing how other families cope with the situation has helped me overcome the difficulties that come along with that.
Given that you care for children with incurable diseases, children’s death is a part of your reality. How do you prepare for that?
You never get used to that reality. When I have to deliver bad news, I like to gradually build a relationship with the families over several visits. That way, I can answer their questions one at a time, rather than overwhelm them with information they won’t be able to digest. It would be too much all at once. It’s worth noting that for these families that, although most of the time there is no hope that the child will get better, I still consider my role very important. I do everything I can to give them an accurate diagnosis and treat the symptoms so that their child, like little Raphaël, is as healthy as possible for as long as possible; and in the final stages, I’m there for those families at the time of death.
Do you have a specific routine before entering a patient’s room in palliative care?
Yes, I use visualization: I go over what I have to do, what I’ll say and how, a lot like a surgeon laying out his or her tools and recalling the precise movements they’ll make. The palliative team is incredible and I’ve learned a lot from them. Most importantly, I’ve learned the power of words. When I tell parents it’s not their fault, there was nothing they could have done and that their child is lucky to have such loving parents, it can really help take away some of the pain they’re feeling.
What does a good day look like for you?
At work, it’s when I know I’ve made a difference, either when a parent leaves the hospital feeling better than when they came in, or when one of my little patients gives me a hug. At home, it’s seeing my kids blow me kisses through the window or the support I get from my husband. These meaningful, real relationships bring me so much joy.
What do you hope you’ll be remembered for?
I don’t expect to be remembered! But if that were to happen, I hope I’m remembered in a positive way. Mostly, I’d like to know I made a contribution through my work but it doesn’t need to be attributed to me personally.
What’s the secret to your youthful appearance?
Hair dye! My hair is almost completely white, and it’s been that way for a long time. As for the rest, I think I’ve just been blessed with good genes.
Tell us something funny about yourself.
I can’t dance. An elephant in a tutu would be more graceful than me! That’s what I told my daughter’s ballet teacher when she was recruiting parents to dance in a scene in The Nutcracker. She wouldn’t believe me and insisted I audition. Four of us auditioned for four roles and they didn’t cast me! But I thought it was a good way to show my kids that failure is a part of life and what’s important is trying your best.