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.
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.