Thursday, February 21, 2013

Bye, Down syndrome

If I could take away the fact that my daughter has Down syndrome, would I?  That's a hard question for me to answer. 

There is a fairly new prenatal screening that can be done on expecting mothers as early as 10 weeks, it's called the MaterniT21 Plus Screening.  This prenatal screen is a new blood test offered through Sequenom Center for Molecular Medicine and is designed to detect increased amounts of material from chromosomes 21, 13 and 18.  Giving parents a 99% detection rate for Down syndrome, with no risk to the pregnancy.  Which means.....parents can now find out earlier, safer and with more certainty if their baby will have a chromosomal abnormality and more time to decide where to go from there.  But what does that mean, "where to go from there?"  To be better prepared for the arrival of their child who may need immediate medical attention?  Or just to be more informed about Down syndrome and educate yourself and your family about this new baby coming into your life?  Or to terminate a pregnancy that no longer seems perfect?  More time and certainty for what exactly??? 

This is where I have a problem with this new test.  I'm all for being prepared and knowledgable about what is going on around you, or inside of you.  But I also know that some medical professionals themselves aren't relaying accurate information about what it means to raise a child with Down syndrome and how amazing their lives truly can be as they grow up into adulthood.  Possibly swaying an already saddened, scared, anxious mother, who only wants the best life possible for her child and possibly feeling like Down syndrome could be a death sentence, for everyone involved.  I didn't have prenatal screening with either one of my girls.  I didn't think I needed to be concerned about anything, and no matter what, my decision would have been the same regardless.  But when I did find out that Sophia had Down syndrome, shortly after her birth, I was given the news as if my baby had just died and my life was over.  It was dark and sad and awkward listening to the doctors tell me that Sophia had Down syndrome.  It never should have been like that, but I was one of the many lucky ones who got to take my baby home and fall deeply in love with every last chromosome God gave her. 

So, if I could take away the fact that Sophia has Down syndrome, would I?  Not if it meant that I would no longer have Sophia.  The effects of Down syndrome like; low tone, increased health issues and intellectual delays, do kind of suck.  I don't want my children to have a harder life than they probably already will, but that's life, it's unpredictable.  I wish that things were easier for Sophia, but I also get so much joy from watching her strive to achieve her goals and when she succeeds....it's a freakin party every time!  The truth is, because Sophia has Down syndrome, I have learned so much more about life, people, love, compassion, respect and understanding of other people's situations.  I understand that we all are walking a hard road in our own lives and it's not for me, or anyone else, to judge another human being.  Sophia, like so many other individuals, is exactly who she was meant to be, and I wouldn't change that for the world!


1 comment:

  1. I love the way you put things into place, life is a gift, a gift given in the up most love from God. Do we take it run with it and all the joy it can give us or do we terminate never to no? Myself, I love the giggles, the smiles, the joy this little gift from God can teach me!

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