One more worth reading…

brothers, each one different

The article A Father’s Search for a Drug for Down Syndrome in this weekend’s New York Times made its rounds quickly around the blog world.

For the most part the article emphasized the idea that doctors approach Down syndrome from two perspectives: *prevention* {advances in prenatal testing which in turn lead to abortion} or *treatment* {medical protocol designed to cure Down syndrome.}

Both perspectives are telling – a child with Down syndrome, *as-is* is not a desired outcome.

Naturally I was a skeptical reader.

Really?  A cure?  How do you fit that into your world when you believe that your son was fearfully and wonderfully made, just as he is – extra 21st chromosome and all?

Yet, the other side of this debate brings with it even less hope:

…A competing set of scientists are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it. They have developed noninvasive, prenatal blood tests which would allow for routine testing for Down syndrome in the first trimester of a pregnancy, raising the specter that many more parents would terminate an affected pregnancy.

Costa, like others working on drug treatments, fears that the imminent approval of those tests might undercut support for treatment research, and even raises the possibility that children like Tyche {his daughter} will be among the last of a generation to be born with Down syndrome.  {emphasis mine.}

Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development…

“The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?”

Gulp.

Even though I may not agree with all of Costa’s goals, I do applaud his ultimate goal, to ensure that his daughter is happy, and independent.  I’m always thankful for those in the medical profession that are working hard to serve people with Down syndrome, but again why do we have to choose one or the other – eradication or medication?

Why do we always want {and think we can have} it all?

Perhaps the problem doesn’t lie with Down syndrome, but instead with those who fear individuals who are different?

To read the entire article go here.

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6 thoughts on “One more worth reading…

  1. I guess I don’t understand why they are looking to do either (eradicate or medicate). Isn’t that what life is all about? Experiencing and enjoying the diversity in all of us? There is nothing WRONG with my child. Even if I COULD “medicate” I wouldn’t. Why would I want to rob the world of experiencing unadulterated love or unabashed happiness? Why would I want to deprive others the opportunity to see what life is really like when you don’t live with cynicism, or hatred, etc but live your life in its entirety constantly hoping and looking for the good in others, and living with wonder and excitement at all of God’s creations and everything around you? I don’t understand….What is so wrong with having Downs? My life – my experiences, and how I and those around me see life is enriched because of my son. Why would I ever want to change that?

  2. We read that article and discussed over a quiet lunch at a local diner. The possibility of being able to help Ainsley keep up with her peers is exciting. Part of me wonders if it’s not another version of keeping-up-with-the-Jonses. But we really see an opportunity to help her reach her potential. If a drug can help her body function better, we’d love to give her that chance. It’s sad that there isn’t much funding to help our kiddos. Lots to take away & ponder in that article. Great post!!

    • Jen – I received an e-mail that touched a bit on this subject – potential, keeping up with the Jonses and such…

      The email and questions:
      I’m confused by your response to the article. Are you saying it is a bad thing if Dr. Costa is able to create a drug that improves the cognitive abilities of people with Down syndrome? I don’t see how this could be viewed as immoral. Are you against the idea that someone born with mental health issues shouldn’t take medication because that’s the way they were born?

      My somewhat lengthy response:
      My issue with the article is the idea that people seem to only view those with DS as people who need to be fixed. Of course I would always seriously consider any medication that would improve the cognitive abilities of people with DS but I also think it brings up a quality of life issue. Who am I to say that Charlie’s current quality of life is poor? From what we observe in our day to day interactions with Charlie he seems to be not only thriving, but living out a good life. Would his quality of life dramatically increase if he could do algebra and speak in French? Some would say yes, but I’m hesitant to agree. I’m sure that many would argue against me on this point, so maybe it is a bit of a moral dilemma after all…

      As for someone who is born with mental health issues {as opposed to someone with cognitive delays} I see it differently. That person has the cognitive abilities to make their own decisions and choices based on the quality of life that they would like to have. For instance they are able to see how an anti-depressant or something similar could both improve their quality of life as well as day to day life.

      The difference for me is that that person gets to choose – to make a decision based on an outcome they are hoping to obtain. However the person with the cognitive disabilities isn’t capable of making such a decision and must rely on someone else to make the decision for them. This is where it gets murky…because in the world we live in we tend to shy away from differences and want to fix anything different – regardless of if it even needs fixing.

      So yes, even though it would be great to have Charlie *fixed* I wonder would he still be the Charlie that we know and love just as he is? And wouldn’t that just be me imposing my hopes for a *normal* child onto a human who for the most part has a high quality of life, even with cognitive delays?

  3. I’m with you, I’m not convinced our kids with DS need to be “fixed”. This reminds me of what my pastor said shortly after my son was born. We did not know Chase had DS until he was born and the initial reaction was devastation. As we stood looking at an infant with tubes and wires attached everywhere, my pastor reminded me that in God’s eyes my baby was perfect. It took me awhile but I am now seeing God’s perfection in him everyday. I’m not sure God sees anything that needs to be “fixed” in our children with DS.

  4. Initially, I was resistant to the “drug for Down syndrome” concept, as well, but as I read the article I realized that Dr. Costa was just doing what many of us do – fighting for maximum inclusion for his special daughter. His methods may be different than mine, but his goal is the same.

    Often, I’ve wished that we could ditch all of the therapy for our two children and just let them be who they are, without qualifiers. However, the drive to help them achieve their maximum potential is always there, so we press on. I believe that Dr. Costa is doing the same thing – seeking a therapy to increase his daughter’s potential, and therefore her perceived value to society.

    In my view, the real issue isn’t with Dr. Costa – it’s with our society that doesn’t value the life of all individuals, regardless of their abilities.

    • I agree Andi, and I’m not trying to paint Dr. Costa into a corner either. It’s just so hard when everyone wants to make a very gray situation either black or white. Ultimately I suppose every parent is just trying to do what is best for their child – Down syndrome or not.

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