Monday, April 21, 2014

The Risks and Rewards of Being a Medical Research Subject



Do you see how much Malachi is enjoying himself here?? This was a total shock to me!

This is during our second visit in the OnTrack study, a Canadian effort to track the progress of children with cerebral palsy. The idea is to be able to give medical professionals (and thus parents) a clearer picture of what a child with cerebral palsy can be expected to be able to do as they grow up.

Although I am wary of children being pigeonholed, I for one would welcome this sort of information. By far, the hardest part of this journey for me hasn't been accepting Malachi's disability, it's been not knowing what in the heck his disability is and whether or not he is progressing faster or slower than one would expect.

As I've mentioned before, there is a gross lack of medical research on cerebral palsy, even though it is the most common motor disorder in children. For a very long time — and even continuing today — doctors would look at the brain scan of a baby with brain damage and compare it to that of an adult with similar damage. Then they would often say something awesome like: "This child will never walk or talk."

Over and over again, they were proven wrong.

Nowadays, at the best hospitals across the nation, doctors look at the brain scan of a baby with brain damage and say: "This child will have cerebral palsy, which may severely affect his function in any number of ways... or be barely noticeable. We have no idea."

Very. Frustrating.

So when I heard about the OnTrack study, I signed Malachi up, though not without some reservations. You see, medical studies are sort of like vaccines. It would be really great if everyone else did them so that we didn't have to incur the risks!

Even though I can see during the process how researchers are trying to be respectful of the children, testing is brutal. The very nature of testing is to zero in on the problem. If you are testing inanimate objects — car battery, plywood, etc. — to discover their breaking point, this is perfectly reasonable. But when the subject is a thinking and feeling human being, it's a lot more complicated. In testing, the subject does a difficult activity until she fails. Not a very fun or uplifting thing to do, and certainly not something that makes anyone, let alone a kid, want to try very hard at it.

In Malachi's case, in particular, he has an extremely hard time with failure. The first time we did the OnTrack study six months ago, he got through about three of the tests before he threw in the towel. The researcher kept trying her best, but he just did not want to cooperate.

So it was with a certain measure of dread that we agreed to the next round of testing. Imagine my surprise, when this happened:



The dude was stoked. He kept reading (yes, he can read) the questions off her paper, relishing in the opportunity to try out the next game.

Of course, a big part of this might be that he was doing AWESOME! He sat unsupported on a bench for 30 seconds, which I didn't know he could do. He also showed off how he could catch himself with his hands sometimes and hold his head steady through various positions, which I know he wasn't doing last time. I was so proud of him!

So even though testing can be trying, I am glad we are participating in OnTrack. Progress can seem excruciatingly slow here at ground level, day in and day out, but having this semiannual check up helps me feel that we are… wait for it… on track!



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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 



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