Defending His Life


Everyone, it seems, has heard about the recent case in which an Oregon Couple Has Been Awarded $2.9 Million For the “Wrongful Birth” Of Their Daughter.  Articles, blog posts, online message boards, and Facebook have all been rife with emotional responses to the verdict.  As for me, I’ve been trying to digest the whole thing and figure out what I, as the parent of a child with Down syndrome, could possibly add to the conversation taking place regarding this case, which comes right on the heels of the new and improved prenatal screenings which specifically target Down syndrome, and the firestorm surrounding those.

Pragmatically, I know that the jury’s verdict (which was reached 12-0) in the Levy case does not necessarily mean that the jurors believe that the Levys’ daughter never should have been born.  The lawsuit was brought against Legacy Health for several counts of negligence – basically, the Levys assert that the chorionic villus sampling (CVS) that Deborah Levy underwent at 13 weeks into her pregnancy was carried out improperly – that maternal tissue was taken instead of fetal tissue – and therefore, an inaccurate result came of the test, robbing the Levys the opportunity they had sought to be prepared.  And yes, they do say that had they been given the correct result – that the fetus she was carrying did in fact have Down syndrome – they would have terminated the pregnancy, as the vast majority of people seem to do in the face of a prenatal diagnosis of Down syndrome.

Basically, after all the evidence and testimony was laid out, the jurors agreed unanimously that Legacy Health had been negligent and had carried out the test improperly, therefore depriving the Levys of the opportunity to make a decision about the pregnancy.

Sigh.

I can’t find it in me to vilify the jury – although I do absolutely have to question what kind of fucked up world we live in where people can sue for the wrongful birth of a child.  The jury apparently did its job, however: they listened to the testimony and they looked at the evidence, and they came to a conclusion – and like I said, their conclusion does not necessarily mean that they agree that the Levys’ daughter should not exist today; it just means that they agreed that the lab that carried out the test carried it out improperly.

I’d like to be able to say that I can’t find it in me to vilify the Levys, either, but I’m having a tough time with that.  They have been insistent that they would have aborted the pregnancy had they known that their baby had Down syndrome.  And yet, they also claim to “deeply love” Kalanit, who is now four years old.  Actually, I sort of get the “I would have aborted had I known” line of thinking.  I’m sure there are many parents of children with Down syndrome who, for whatever reason, didn’t find out about their child’s diagnosis until after birth who might say, “Had I known beforehand, I would have terminated,” but that’s almost always followed up with, “But, goodness, am I ever glad I didn’t!  I can’t imagine life without him/her.”  I wonder if the Levys have ever said that – that they’re glad they didn’t abort.  I kind of doubt it; saying that would have hurt their lawsuit.

It seems to me that they have had to hold onto an awful lot of anger and bitterness to pursue such a lawsuit.

I’m still not sure how the multi-million dollar verdict can be reconciled.  Apparently, it’s intended to cover “the estimated extra lifetime costs of caring for a child with Down syndrome” to wit:

Miller [the Levys' attorney] said they sued because they worried about providing all that their daughter would need over her lifetime. Experts testified that she will continue to need speech and physical therapy and face a concerning list of possible medical problems over her lifetime. Professionals have told the Levys that she will likely never be able to live independently, or earn a living.

So the dollar amount was based on expert testimony (originally, the Levys had sought $7 million).  Who are these “experts” and “professionals”?  Are they the same experts and professionals who paint such a bleak (and outdated!) picture of life with Down syndrome that most parents facing a prenatal diagnosis decide to abort?

First off, speech and physical therapy are paid for by the State.  Apparently, the state of Oregon is actually one of the better places to live in the US if one has disabilities and requires services.  And the “possible medical problems”?  Don’t all of our kids – Down syndrome or not – face a multitude of “possible medical problems” over the course of their lives?  Yes, Down syndrome puts one at higher risk for certain health issues, but risk isn’t guarantee, and my understanding is that the Levys’ little girl is healthy.  And “likely never be able to live independently, or earn a living”?  I mean, gosh.  Can we project anymore of a grim or speculative future for this little girl?

I think what bothers me the most about this whole thing is that this case just bolsters the apparent world view that people like my son, Finn, are burdens, errors, mistakes.  It not only undoes all the advocacy I and so many other parents have worked so hard to undertake, it paves the way for lots more lawsuits just like this.  (And if the Levys so deeply love their daughter, as they say they do, one would think that they, too, would at some point advocate for her, for her worth, her value to her family and to the community.  But how can they now that they’ve fought and won a lawsuit that renders her life a mistake?)

I was looking through old photos of my kids over the weekend, reminiscing as mothers do, and it hit me: Finn is the only one of my kids whose very existence I’ve had to justify – ever since the first person asked me after he was born, “Didn’t you have the testing?” like an accusation.  This could have been prevented, you know.  On some level, I’ve been defending his life since he was born, and I suspect I will have to keep on defending his life for the rest of his (or my) life.  And why?  Because he’s a little different.  Because he’s a little slower.  Because he needs some extra help.

These are people we’re talking about!  Human beings!  Not defective merchandise.  Not a dress that ended up not fitting when we got it home.  They are people.  People we created.

Sometimes it all just feels like a losing battle, the energy and tears and passion I expend to make the world see Finn and people like him as worthy and valuable.  What kind of world are we living in?

Thank you, Ariel and Deborah Levy.

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12 Comments on “Defending His Life”

  1. DS Class of 2008
    March 19, 2012 at 11:38 pm #

    I’m a math person and ya know, you can calculate all that–the EXTRA risk associated with increased odds of leukemia and early onset Alzheimer’s. You really could but WHY WOULD OUR ETHICS SYTEM ALLOW US TO DO THAT? It’s not right. ‘Truncate’ that with the simple FACT that anyone who is SPARED cancer and heart disease will ALSO face dementia and not ‘live independently’ but odds are CHEApER on society that our kids will be drunks and wasteful of their precious capabilities say binge drinking and raving and pot smoking away their teens and early adulthood.

    Large Verdicts are OFTEN reduced and overturned. Those adjustments don’t hit mainstream newswaves. Let’s make sure this case if monitored and shed light on the final result because I’m moving to Mars or Atlantis if it’s not.

    • DS Class of 2008
      March 19, 2012 at 11:41 pm #

      I mean typical people also face dementia and not living alone over a certain age too. This verdict cannot possibly take all of our societies nuances into consideration. It’s crazy to measure the value of a life period. This value is not measuring the result of an accidental disability due to an error or car accident. Sigh

  2. Holly F.
    March 20, 2012 at 12:15 am #

    I vilify the Levy’s and cannot stop.

    Don’t people have an obiligation to mitigate damages? If her wrongful birth was the “damage” as a result of the faulty test, they could have given her up for adoption to a family that can afford to care for her without a huge settlement. Then they wouldn’t have needed to sue.

    Funny how so many of us moms are not anywhere near millionaires but still manage to care for our children with Ds. I think that is called PARENTING.

  3. Alyson
    March 20, 2012 at 1:06 am #

    I have been waiting for your response to this. I don’t feel like I really have a right to an opinion on this case as I am not the parent to a child with Down Syndrome. I do however have a child with Autism which cannot be diagnosed prenatally. I also had an amniocentesis 12 years almost to the day with our first son. We would not have aborted,but,there were issues with his heart and along with a high AFP test and our own ignorance and quite frankly just being uneducated on things like Down Syndrome,etc. Anyway I understand the anger of after choosing to go through an invasive medical test for an answer getting a false amswer…well I get that part. What if there child had ended up with a much more debilitating diagnosis is what I think about?
    I really don’t know. I personally think a child born with Down Syndrome is, without hesitation, a life worth living. I think the jury did their job with the facts presented. I don’t know how I feel about the parents filing a lawsuit though..it feels gross,but,it is their right. I guess I would like to know more about them and their everyday life before I can vilify them. However I can definitely understand why many parents whose children have Down Syndrome can easily vilify them because it feels personal.
    Having a child with Autism is different. Nobody makes me justify why I had him,but,I definitely have to fend off other judgements about him on a constant basis.

    • Alyson
      March 20, 2012 at 1:11 am #

      I just wanted to expand on my abortion comment. I am incredibly pro choice for women. I would not have aborted our son had my amniocentesis been positive for Down Syndrome because along with being 19 weeks along,I can’t imagine ever choosing abortion for myself,but,I do support a woman’s right. I think the only way to change the sickening rate of abortion of babies with Down Syndrome is to change the way people view Down Syndrome. That picture of Finn is a pretty damn good start.

  4. Jenny
    March 20, 2012 at 1:53 am #

    I was in tears at the end of this post…I feel the exact same way…I feel I have to defend my child’s right to life and it’s not fair…Like you said, we are talking about PEOPLE here, not damaged merchandise!!!

    The Levy lawsuit was bullshit…And call me judgmental but I do question how much they love and value their daughter. They cannot love and cherish her as much as they claim they do and then in the same breath tell the world that they would have aborted her had they known she would be the way she is.
    What a fantastic example for their other children…Teaching them that some lives are worth more than others, and their sisters was worth nothing at all because given the chance they would have made sure she didn’t even exist!

    No amount of money would ever be worth mingling my sons name with the disgusting words of Wrongful Birth!

  5. jonashpdx
    March 20, 2012 at 5:22 am #

    I’m not going to get into the case as far as that goes, except to say that I’m conflicted both by the case itself, the verdict, and the ultimate meaning of it all, but as an Oregon resident, figured I’d put in my two cents about the state-based services.

    We’ve opted out of the state-based medical services for our son because, frankly, they sucked. The therapists didn’t really listen to our input, didn’t treat our son as a person rather than a generic diagnosis, and didn’t SEE who he was before making decisions based purely on Ds.

    And since Oregon is one of the few states that doesn’t have a medicaid waiver related to Ds, health insurance has been (until recently with the change in the healthcare law relating to children with preexisting conditions that went into effect in 2010) extremely costly for my son, with most of his therapies — again, until late 2010 — able to be excluded from coverage because of his permanent disability. I won’t go into all the healthcare/therapy travails my family has been through, but I’d beg to differ with the assessment above.

    • Holly F.
      March 20, 2012 at 6:02 pm #

      I’m sorry that your state-based services sucked. I work for my state’s Early Intervention as a case manager, and I’m in grad school to become an SLP. I cannot imagine being able to work with therapists that do not see our kids as individuals. I would have to go off on a therapist for that.

      But I’m a mom of a child with Ds. Sometimes that makes my job both better and harder. Better because I know what parents are going through and can empathize on a level that others (at least parents of typically developing children) can’t, but harder because what I want for all children enrolled is not always what the state wants to provide.

      Sometimes my boss has to remind me to play politics and not let my advocacy for our children override my job. I smile and say, “Yes sir.” Then I advise the parents the way I would want to be advised as a mother. Hey, that’s life. The children are more important to me. It is not some HUGE cognitive dissonance issue but it is there. I would rather answer to my boss for doing what I felt was right for the kids than answer to the parents for playing politics.

      So I’m sorry you and your child experienced that. Therapists sucking pisses me off. Do your job and do it well or effing find something else to do! Grrrrr.

  6. DS Class of 2008
    March 20, 2012 at 6:21 am #

    You rock. We can do this parenting thing, despite the sadness and judgment of the world. Please mention http://www.downsyndromepregnancy.com whenever possible so parents facing the TIME crunch are given BALANCED information and ALL options including adoption. The medical community STILL tells parents sorely outdated information.

    I’m awaiting the day of the wrongful TERMINATION LAWSUIT. That’s the bandwagon I’m offering my services towards–calculating the COST of the MISINFORMATION (your child will never walk) that lead a family to terminate

  7. Anna
    March 20, 2012 at 11:13 am #

    Yeah, Lisa, as usual I find your judgment spot on.

    True, technically it is possible to somehow entertain both beliefs: “Our girl should not have been born” and “We love her”. But humanly it sounds pretty damn contradictory…

    And, as you say, this has nothing to do with being pro-choice.

    It must be absolutely heartwrenching for you to find yourself defending Finn’s value. It should be obvious, it should not need any arguments whatsoever.

    But I say you keep at it! The world needs this.

    And, of course, any post with Finn’s picture makes my day. You da man, Finnian!

  8. Shannon
    April 13, 2012 at 12:25 pm #

    Wow, girl…well said! I’m in…Kelle Hampton ranting and all! LOL!!

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  1. Dont Lick The Ferrets - World Down Syndrome Day - March 21, 2012

    [...] read Lisa defend Finn’s life. [...]

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