In 2009, when Noah had his manometry, the doctor started it the same day they placed the probes. He did one part of it that same day, then the second part the next day.
We were thankful for this because it meant we got out of the hospital sooner, it also meant less suffering for Noah. The probes are very uncomfortable, as they are large and go through his stoma in his stomach and down below.
In 2014, when we visited, we were scared to death being from out of town, but we had faith in our physician, one who had been treating our children since 2007. The moment we walked in the doors at Children's, we felt the dynamic had changed, and we had immediate regret, but it was too late. We were in too deep to leave.
After Noah's procedure to place the probes, the doctor told us they were going to go ahead and start the testing in case the probes got dislodged because Noah was uncomfortable. We consented to that.
The testing started that evening. The testing is painful. It was hard to watch Noah endure it. He retched, and we promised him it would be behind him soon. We'd be able to leave earlier than we expected because it was starting early.
But the next morning, the lady came and started the test from scratch. We asked if there had been a problem with yesterday's? She wouldn't really answer me. Just told us it was normal to start over, but this wasn't our first rodeo. We knew that wasn't true.
Then, a research student came by a few hours later, smiling, and said, "I'm sure they've already discussed the study with you all. I'm just here to get you to sign consent."
At that point, Noah was very sick from the manometry. The contents from his stomach were leaking out of his G-tube stoma, burning his skin. He was retching. His stomach was cramping. He was screaming and crying in pain.
We went into the hall with her, and asked her what she was talking about. She told us the reason they had started the manometry the day before was because there are a lot of places who start the the testing too early, the day before, and they know that gives false results because anesthesia slows motility. So, they, at Children's, were trying to prove this by doing testing on the day they place the probes and the day after.
But see, we, as Noah's parents, should have been told prior to them starting the manometry the day before that the reason Noah was going to be subjected to it twice was for research and not because they were trying to figure out what was wrong with our child. Again, because this isn't our first rodeo, or Noah's. He knows what a manometry is like - how painful they are. He's traumatized by them. There is no way, we as his parents, would have subjected him to such pain and over-medicalization to prove something that is so obvious - that anesthesia slows motility. That could be proven in a much less traumatic way - and on someone else's kid who hasn't had to endure so much stuff, who wasn't as medically fragile at the time as Noah was in October of 2014. Regardless, it was our decision whether Noah was a participant in their study, not theirs. And it should have been before the fact he participated, not after.
At that point, though, what was done was done. He'd already been their guinea pig. He'd already suffered at their hands. We'd already become their victim. And to not sign those papers would mean that Noah's suffering was for nothing. And really, signing them was just a formality. It gave them permission to use his data. To not sign them meant his data went in the trash. All those tears, retching, pain would be for nothing.
So, as painful as it was, we signed our names on that line in hopes that the suffering he endured that afternoon when we told him he'd get to leave the hospital early and do something fun (which he didn't - he left just as sick as he came) would count for something. We prayed that maybe Boston Children's Hospital would find a way to make good for some other kid. Because for the first time, they didn't for ours.