Friday, March 1, 2013

Kicking Off Trisomy Awareness Month With a Fight

March: the third month.  Trisomy:  three chromosomes instead of the usual two.  Fight: to put forth a determined effort, to struggle to endure or surmount.  And here we go again. 

I never, NEVER dreamed that things like this happened today.  In Germany, pre-WWII, among Hitler's very first victims were the infirm in body or mind.  He started with them.  Today, while I'm sure they would be appalled at being compared to him, doctors still sometimes decide that a person's life is "not worth living."

So, since my eyes have been opened, I wanted to share with you just a couple of examples. Unfortunately, there are many more.

First is sweet Peter.  He was six years old when he lost his battle.  But it wasn't Trisomy exactly that took him.  It was that his hospital records had "Trisomy" listed as one of his diagnosis.  He was allowed to bleed to death, yes, "allowed" is the right word.  His mother and others are now fighting to make sure that in Minnesota, hospitals must make public their "futility policies".  YES, hospitals DO HAVE THESE, where THEY decide if it is worth fighting to stay alive.  Here are a couple of articles, pretty short and well worth reading about the fight going on in Minnesota.  And lest you think that Minnesota is all alone, please know that they are not.  It's just where that particular battle is currently being fought.

  • Peter Kellett and Trisomy 18: Part I - excerpt from the article
    "The doctor said infection from appendicitis had strained Peter's heart to cause death. But the Kelletts weren't believing him. They ordered an independent autopsy, which found no infection. Peter had internally bled to death."
  • Peter Kellett and Trisomy 18: Part II - excerpt from the article
    "She said, "All throughout Peter's life, from the beginning, the only help it seemed we got (from the medical profession) was to help him die. There was a huge difference between the way doctors treated Peter and the way they treated our other kids. It was like they couldn't see the value of his life. The doctor (at his birth) said Peter would never contribute to society. My argument has been that people with disabilities contribute to society in the most important way. They help us become better people. I call them 'teachers of our souls.'"If having known that particular hospital had adopted a futility of care policy, Kellett wouldn't have taken Peter there. She said parents had the right to know these policies existed. She said, "I have a feeling what's behind (these futility of care policies) is saving money. There's a lot of passive euthanasia going on, especially involving kids with disabilities. We're still devastated over how Peter died." 
I love in the article when she challenges the doctors who say that Peter's life has no meaning.  She points out that children like Peter are "teachers of our souls."  In our world today, where so many souls seem lost, could it be that these children are the most valuable teachers we have?

Also, it seems ironic but appropriate that, once again, as a community, we are fighting to help a child live.  Fortunately, some people with some very big clout have gotten involved, contacted some doctors and plans are being made (changed!).  Today, baby Vanessa is fighting for her life.  Her parents are fighting with her, against her hospital.  She is at CHOP, one of the very best hospitals in the United States, but it has taken some muscle to get her treated.  You can read about it here on Facebook or here on  

Please, don't close your eyes to this.  Don't think that it doesn't involve you.  It does.  When someone decides that a life has no meaning, it touches everyone.  Spread the word.  Trisomy happens.  That is not the tragedy.  That there are those who think it makes a life unworthy, that is the tragedy.  Edmund Burke said, "All that is necessary for the triumph of evil is that good men do nothing."

Look how far our little teacher has come.  He's worth the fight, and so are the others.

Remember the worth of souls is great in the sight of God.


  1. I had never heard of this condition until early tests during my last pregnancy. The test results came back "abnormal" and followed with many detailed ultrasounds. They explained the condition somewhat, while I did much of my own research. They explained that most children born with this condition only live hours, perhaps days and never past a year. They asked me what I wanted to do? We answered "Just send us home. All we wanted was a baby, whether just for the 9 months we are allowed to carry in my womb or a few hours or however long they live. We will just go home and cherish the rest of our pregnancy." Our little girl was born without the condition and is about to turn 8. I have never forgot this condition and will remain aware for the rest of our lives and pray for families that live with the challenge. Thank you for the blog.

  2. Thank you, again, for your post.