Rio Landa: Voicing concerns and asking questions in SMA care

Rio Landa, physician whose 14-year-old son, Mateo, is diagnosed with spinal muscular atrophy (SMA) type 2, describes her approach on seeking second opinions or voicing concerns about changes in SMA care or management.

At first I think I was more apprehensive to ask questions of why we were doing something or … you know, Mateo got this — I’ll never forget, he was 2 years old, and probably not even — and he got his first back brace, and it was a super hard, awful thing. They cut a belly part out that didn’t work and I was like, “You’ve got to be kidding me.” I mean, he hated it, he cried. It just looked, it was like a rock on him.

And we were told — we went, you know, we drove three hours north to this specialist and came all the way back home. I think that was one of the appointments I went to later that week was to say, “This really isn’t working.” And they were just like, “OK, well, that’s all that they had there.” But it turns out actually, in a closer town to me, we had a newer physical therapist that had heard of a new brace, so we were able to go get an even better brace.

So I kind of had to first say, like, “Hey, his isn’t working for us.” So I think not being afraid to say like, “Hey, why are you doing something this way?”

And as a provider, you know, I never mind when my patients are like, “Hey, why are you doing that? Or why do you wanna put me on this medication? Or why don’t you wanna put me on this medication?”

You know, and I always love when I feel at ease as a parent and also my patients do as well, because then it’s like, “OK, they understand.”

And as well as if they go somewhere else, they can say, “Hey, this is why my, you know, so-and-so didn’t, but what’s your opinion?” I think it’s OK to say, like, “Hey, why not?” I don’t think there has to be — I don’t think it’s seen as rude or, you know, but I just think it really is viewed as that you are an advocate for yourself.

And I think that’s really, really important that, you know, my son is really smart and he is able to articulate, and we ask questions if he doesn’t want to do something. You know, the back surgery: He asked the surgeon himself, “Why am I doing this?” And we looked at the X-rays together, went through the curves, and went, you know, and so he was able to go, OK.

And that really helped him with, you know, “why and why me?” to have such a big procedure.

And so I think asking why, and I think, you know, if you’re still not comfortable — again, I am really cautious of asking, I don’t ever want to ask healthcare advice on social media or … But asking like, “Hey, what has someone else done in this situation” is OK. And maybe getting, if you have the availability, to get a second opinion, I don’t think that’s a bad thing.

You know, I think that there are many, there’s a lot of treatments out there which are so new for some of us. And I think how aggressive you can be with approaches is also very personal. And I think that’s OK. And so you have to find something that, you know, yourself, your children, or your significant other — if they have SMA — that they are comfortable.