“The value of clinical research is in front of us every day. It’s up to us to really appreciate it.”
My name is Shanine Lafreniere, and I am an optometrist in Fort Saskatchewan, Alberta. And also a mother and a wife at the same time. We have three beautiful kids: Adalyn, Axel, and Elyse. When you decide to have children, you assume everything is going to go smoothly. But no.
Adalyn was our firstborn. She was born in March of 2013, and shortly after she was born we found out that she had biliary atresia, which is a liver condition that kids are essentially born with. And it just causes really rapid cirrhosis of the liver, and kids end up being in liver failure within the first few weeks of their life. So it was a little bit of a curveball for us; we weren’t anticipating that at all. There [were] no prior indications, no ultrasounds that showed us anything was wrong. She was growing fine.
When that diagnosis was made, yeah, it did throw us for a loop. Adalyn was going to need a liver transplant, and the only place in Canada currently that liver transplants on children are performed is at the Stollery University of Alberta Hospital in the west, and University of Toronto in the east. So we were headed to Edmonton.
The goal was to get her bigger and stronger before transplant, but these kids very rarely grow and thrive, that’s for sure. And she ended up getting her liver transplant on December 18, 2013 at nine months of age. So you look at her now and you’d never know. She goes 100 miles an hour every day, all day. So yeah, we’re really lucky.
When you think about clinical research, everyone feels like you’re gonna be a lab rat. And putting your child in that position is particularly burdensome, I guess. You really have second thoughts. Is this a really good idea? Should we just go with what we know? But we had a lot of really good support at the University of Alberta Hospital: the transplant program, the research team that’s there. And they are willing to answer any question that you possibly have. Any reservation that you have, they’re happy to address. But it’s not a pressuring kind of feeling; if you want to back out at any time, go ahead.
And I think once you’ve been through the hospital system, and you sort of see that there’s no way that the clinical advances and the help that your child had received would have even been possible without these kinds of studies and this kind of research being done… You sort of want to give back. And that’s a good way to do it, is to be involved in these kinds of things.
I guess it’s up to us to really realize, where is this coming from? It’s not a miracle. It’s hard work and research and volunteers and a lot of man-hours. The value of clinical research is in front of us every day, and it’s just up to us to really appreciate it.