Sunday, March 8, 2015

Let's End the Label "Incompatible With Life"

To sign this declaration, please visit
A few weeks ago, I wrote about when we first discovered that Aaron was going to have more challenges than the rest of us.  (click here for that post.) That was on a snowy Thursday morning.  (Some things are just imprinted in your mind, you never forget.)

The next Tuesday found William and I at Utah Valley Regional Medical Center, meeting with a Maternal Fetal Specialist.  We were given the doctor's name and the time to be there.  In a situation like that, you don't negotiate, you just make it happen.

The tech came in and did an ultrasound, then Dr. F came in.  I think that's when we first met her.  She looked at the images that her tech had taken, and spent more time getting more views.  I was laying on the table, William was to my left, she was to my right.

I remember, she looked at us, eyes full of compassion, put her hand on mine, and said, "I'm so sorry.  I have to tell you, I think there's about a 98% chance your little boy has something called Trisomy 18."

I started crying.  She asked if I knew what that was.  I said, "It means he's "incompatible with life.""

And just like that, our course veered off in a whole new direction.  But we were so fortunate.  She told us from the beginning that there would be hard decisions to make, and it was her job to make sure we had the tools to make them.  She would follow our direction, and we were free to wait to make decisions, and to even change our minds.  But she would do whatever she could for us, and for our son.

Immediately, we told her we would be carrying to term, or however long his heart continued to beat.  That was our starting point.

But I remember asking, over and over as I learned more, "Why can't he live?"  He didn't have any vital organ defects that would make it impossible.  Some kids with Trisomy do, some kids without Trisomy do, too.  But his vital organs all looked pretty good.  And I just couldn't understand.  My doctor didn't know either.  All she could tell me was, "we don't know why, they just don't."

But as I searched the internet, I started finding children, living children with Trisomy 18.  I got excited, so did she.  We just didn't know.

And that's where this is going.  Knowledge is power, and we need more of it.  This week, on Wednesday, there will be an initiative presented to end the term "incompatible with life."  Because those three little words have so much power, power to mislead, power to wound, and power to destroy.

No, not every child with Trisomy 18 will live.  Not every child with 46 chromosomes will live.  But let's learn together, let's find the options.  Let's give support.

This week, there is an initiative being presented at the United Nations in Geneva to end the labeling of unborn children as "incompatible with life" and give support to moms who choose to carry to term.

You can sign a petition to support this decision.  And YES, your voice does matter.  Show that life, beautiful, precious, fragile life, is important, and so is hope.  It will only take a few minutes.  I think it took me less than two, and I expounded on my reasons why I was signing.

Please, for Aaron, and for the other moms and dads who are not given any hope, any support. Because my experience with my doctor was not the norm.  It was the exception.  Everyone should get a chance at life.

"If you knew that hope and despair were paths to the same destination, 
which one would you choose?"  -Ginny Dye

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