Thursday, March 17, 2011

Eradicate what?

A recent research study concluded that a new, non-invasive blood test can correctly detect babies with Down syndrome in utero.  The lead researcher, Philippos Patsalis of the Institute of Neurology and Genetics in Nicosia,  told reporters:

    This method can apply to all pregnancies not only those at risk," he added, describing it as "one of the most important milestones in the history of the institute."
   He said the cheaper and quicker method of blood sampling rather than collecting fluid from the womb will encourage more couples to take the test and therefore slowly eradicate the disease.
   "There is no cure, so this is a test for couples who want to know and prevent it, they are the ones who must decide on the fate of the pregnancy."      
(Click here for the full article) 

 After reading this, I felt kicked in the gut.  This person is a clinician, and he thinks that people with the trisomy 21 "problem" should be "treated" or in other words ....terminated. 

Let me be clear:  Down syndrome is not a disease to be eradicated.  It is not HIV.  It is not smallpox.  It is not life-threatening in ANY way.

Yes, Down syndrome is a condition, some would say a "disorder."  But it is not a disease.  It is not something that can necessarily be -- or needs to be -- "cured."

Yes, Down syndrome is challenging, both for parent and for the child, as well as extended family.  There are more medical appointments.  More therapies.  More interventions.  More need for patience.  More money for things not covered. 

But...there is more joy.  More life in the moment.  More hugs.  More smiles.

By choosing life for my child with Down syndrome, my husband and I stand differently than most in this world.  Yes -- 92% of people who learn their child with have Down syndrome will terminate.

(Disclosure -- we knew we had a 1 in 2 chance of having a child with DS, but did not have an amnio, and so delivery was still somewhat of a "surprise" of sorts).

Ninety two percent.  Don't believe me?  Check out this link from National Institutes of Health.

This is 92% of those who know---who have to go through an invasive test, such as chorionic villus sampling at 13 weeks or amniocentisis at 18-20 weeks.  Both of those test have fetal risks.  And this isn't counting those who may have terminated prior to 13 weeks.

But this new test brings new ethical issues.  There are currently some who don't want to "harm their baby" and go through the tests -- but might they do so now, that there is a simple blood test?

Have I not scared you -- or myself -- enough?  Here are some more sobering facts.

From the Wall Street Journal in 2005:
Researchers at the University of Connecticut Health Center examined birth-certificate data and, in a paper published last year in the American Journal of Obstetrics and Gynecology, estimated the number of Down syndrome live births in the U.S. declined 7.8% from 1989 to 2001. They suggested that the drop was due to the use of prenatal diagnosis and the termination of pregnancies.

From Science Daily in 2009 [note:  Slotko, the researcher mentioned, has a sister with DS]
Research reviewed by Skotko showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. 

I could keep quoting.  But it is disturbing.  And it's not just about Down syndrome.  The NIH study includes Klinefelter syndrome, Turner syndrome, and others.  What's next -- autism and cerebral palsy?  Are we going toward a Gattaca society where even the slightest thing -- say, a child's gender, or chance for brown eyes, or my middle daughter's too-curly hair -- is to be silenced and finished?

This is scary.  I know that many people may read this and think it doesn't apply to them.  They aren't pregnant.  They don't have a child with Down syndrome. are alive.  You have life.  You have dignity.

At what point did God decide you were worthy?  Did Jesus choose some on the cross to die for, and some not? 

Of course not.  He died for all.  But our world changes the question, and so let's pose it again.   At what point did another human being choose your worth?  That, my dear, prayerful friends, is the ultimate question I am struggling with tonight.  And I say this angrily, humbly, prayerfully, and with a heart full of tears.  For my heart was not what it is now, or what it will be in the future.  But I have three precious beauties upstairs, one with an extra chromosome, and through them, God has taught me much.

Blessings to all who have gotten this far!


  1. This is really sad. The world seeks "perfection" and to destroy whatever doesn't meet the standard. I don't meet the standard! Thankful for God's grace and mercy.

  2. I wonder what it takes to stop a clinical trial? They are coming to the U.S. and elsewhere to test this procedure on other women.....

    What you say is so true, Gwen--at what point does it stop? The larger problem is that "society" continues to have this mentality that everything needs to be "just right" for the person in the situation. Nobody takes what they're given as a blessing from God; they go for what they want, regardless of God. "I can fashion my own prenatal test? Bring it on...." [Shudder!]

    Keep us posted....