This post has been brewing for months and months. I'll start it today, but I wouldn't be at all surprised if it takes me a few days to complete. (Ahem... I wrote that sentence one month ago.)
For years now, ever since I spoke openly about Thomas, his arthrogryposis, and our decision to end his suffering, I've felt myself flailing and scrambling to explain that his case was no "ordinary" case - if such a thing even existed. I have struggled to explain what our doctors were telling us - probably because much of the detail was lost in the flood of grief and shock that comes with such a diagnosis. I was left with a clear "big picture", but no real way to tell others why we were so certain that Thomas would not have survived.
Every now and then, an adult living with the disease comments and tells me that I made a grave mistake because arthrogryposis is not a death sentence. Some are gracious and attempt to be civil and understanding. Others are not. I can understand the motivation - not wanting others who may find this blog to misunderstand their own case or that of their child's - but nearly all make the mistake of equating their circumstances to ours.
Here's the bottom line: if you are LIVING with arthrogryposis, the severity of your disease is not the same as Thomas's was.
And now, I can explain why. Scientifically.
A few months back, while following the searches that lead to my blog, I found this study. My blog and this medical anthology are both listed when one searches "necessary termination for arthrogryposis". Intrigued, I read the whole entry. No such information was available online at the time we were making our decision. And I wish it had been. Because it would have been easier for my scientifically-inclined side to understand what the doctors were saying within a clinical context.
But for those of you who have better things to do today than read through dense medical texts to learn about a disease that most likely will never touch you or those around you, here's the main thrust:
The text cites a study* of 15 infants with severe arthrogryposis, who also had markers that indicated they could not breathe on their own (decreased fetal movement, micrognathia, polyhydramnios, and thin ribs). Thomas was suffering from all three of these medical conditions. In this study, 14 of the 15 were confirmed to have arthrogryposis (one case was a misdiagnosis, and ended up being a different kind of severe muscle disorder), and of those 14 every single baby died when life support was stopped at anywhere from a few hours after birth to a couple of months.
Every. single. baby.
That is what the doctors were telling us, and that is what I tried to convey in all of my other posts before this. Thomas would not have been able to breathe on his own. And our decision to end his life peacefully, without the bone-breaking** pain and suffering of a delivery; without the risk to my own body from carrying a baby that would never live and all of the medical complications that come with that; without the myriad of emotional damage that would have come from the congratulations of strangers at the sight of my belly; all that Todd and I went through was to save Thomas from that indignity. And I will forever know in my heart and soul that we did the right thing.
And now I hope that those of you who come here in defense of those living with arthrogryposis will understand that your circumstances were not ours, and that our choice does not diminish your life in any way.
*Between the time I began this post and now, the PDF has been redacted. The pages that cite the study are no longer available. So these statistics are now from memory. But the conditions that indicate an inability to breathe without support are still available.
**Thomas's body was too frail to withstand delivery. His bone density was so low that birth would have very literally broken him.
