“It’s better not to exist and give damages for having to exist”

My very good friend Caley brought a story from the US to my attention today. It concerns Deborah and Ariel Levy, a couple who, having been told that their child did not have Down syndrome, carried on with the pregnancy only to discover that their daughter did indeed have Downs. A doctor at the Legacy Center for Maternal-Fetal Medicine in Portland, Oregon, had ruled it out. Here’s what Oregon Online has to say about it.

But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they’re suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

Now forgive me if I come off as trite. I don’t mean to. I have some small experience of the gunk you get when Oops!yourbabyhasDownsyndrome! goes into your ears and zings around your suddenly utterly empty mind, bouncing off the smooth walls of the place where you used to be able to do things like thinking. Thoughts did assemble at some point, but I remember distinctly… no, lemme be sure… Yes, I categorically remember that at no point did I think WOW! THIS HAS TO BE WORTH FOURTEEN MILLION!

Another quote.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as “heartless.”

Oh you think?? ‘Babba, you’re just as dear to us as our other two kids, but somehow we reckon it’d have been worth fourteen million dollars NOT to have had you. We sure hope you’re okay with all that. Later on, like.’

“They feel very strongly that what happened to them was wrong,” Miller said. “They were given incorrect information, and their lives have changed because of it.”

No doubt there are thousands of tears and a whole lot of emotional heartache gone into the legal decision for the Levys. I do not care. You made a bad call, guys. A shameful call. You could bring a lot of honour on yourselves by admitting that and getting the hell on with the randomness of life as it’s been laid down for you, for me and for every other person on the planet. What court in man’s remit has the moral right to give you $14 million compensation for a beautiful baby’s life?

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What would Bono do?

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27 comments on ““It’s better not to exist and give damages for having to exist”

  1. John Keyes says:

    Assholes.

    But to answer your question, Bono would “make it better”®.

    • Nick McGivney says:

      I may grumble about Pope Bono on occasion, but It’s a Beautiful Day is a mighty epitaph all the same. Great to see you here, Mr Keyes. Thanks for stopping by!

  2. Ruth Seeley says:

    You either consider a child a gift or a curse. If the latter, you have no business having one. But the decision on whether it’s a gift or a curse is irreversible, and if you’ve decided the former, I agree, you have no right whatsoever to ask for your money back.

    Any child would have irrevocably changed that family’s life. And there are just no guarantees at all in life, except that you don’t get out of it alive.

    • Nick McGivney says:

      Oh you betcha, Ruth. I didn’t expect a skin-crawl reaction to this, but that is what has happened. And I bear no ill will whatsoever to the Levys, but this feels just wrong. And great to see you here too!

  3. […] easy to be outraged – Down’s Dad does a good job of summing up the initial reaction, but as Cate at I Don’t Know What to Say notes, it is somewhat […]

  4. Sharon says:

    People who opt to take these antenatal tests and assume they would do like almost everybody else does when a disability or disorder is diagnosed (in our society that does not value all kinds of people), must still realise that the test is not 100% accurate. There are false negatives and false positives.

    Aside from that, what they are doing now that their daughter does exist and they claim to love her, is incredibly heartless. They might try to convince themselves that they’re doing it for her, but I bet she’d rather have the love and respect of her parents than the cash.

  5. Cal says:

    Thanks for writing about this. I knew I couldn’t do it justice but you did a beautiful job.

  6. Elbog says:

    A doctor, interpreting our level II ultrasound results, after a high AFP score, made all the measurements and said(yes, I can still hear his voice in the still-darkened room)”I don’t think you have anything to worry about.”
    Of course, that memory makes me angry. He was wrong. However, in our case, the correct diagnosis would not have taken Emma’s life; it certainly would have changed our lives a bit sooner. In light of all the rest that’s changed, it just became a matter of timing.
    There’s pain here, certainly. You say you don’t care, but that’s not true. Your anger is manifested in different ways than mine or theirs. Theirs will play out in court, and I suspect that a smaller settlement will be made that will not ease any of it; it will most likely transform into complete bitterness.
    What we should care the least about, and what I read, is that they did not get what they ‘wanted’. *That* is a sad manifestation of life on this planet, my friend.
    Bono can pretty much do what he wants, but he still hasn’t found what he’s looking for. Neither have we.

    • Nick McGivney says:

      Yeah, Elbog, I know it’s the reality of things. I say I do not care and you are right to call me on it. I ought to be more specific. I do not care a bit that the Levys’ emotional pain is channeled via the courts. It has an unfortunate side-effect of collaterally putting their daughter in the way of some harsh and unlovely judgements either way, and that should not have happened imo. A slower rush to the attorneys might have allowed the to know the person first and a different outcome could’ve been possible. Of course maybe I’m the ass here. That is always a distinct possibility.

      • Elbog says:

        Not defending them over you at all; I’m a bit further down the road, that’s all. I was spitting angry for quite a while – it can be exhausting. There’s still plenty, but I consider myself a bit more ‘tempered’, be it a metaphor for steel or for tea – not for me to decide. Time is a player, the long view the currency of the ‘special needs’ parent.
        If it’s you, then “Nice ass.”

  7. NAN P. says:

    This does not sit right with me either. I agree with Elbog, there is pain there. But, as you point out, there is life, more exactly This Is Life, and pain goes with it. I feel for them.

    But still, it does not sit right. If the child had been “given” a desease through a mistake in a medical procedure, seeking some compensation could be understood. But what if the reverse had happened? What if they had been told she did have DS, and they had decided not to have her, and then been told, too late, “Ooops, yourbabydidnothaveDSafterall. Sorry!” What then? Would they have sued? And for how much? $130 million? How can they put a price on her life, literally?

    The decision to have this child was theirs, and theirs alone. End of!

    On a lighter note, Jacob, you are too cute for words, a little rocker after my own heart! You even have the “get me out of here” face…

    • Nick McGivney says:

      Hey Nan! Great to hear from you. I agree with what you say. I think I understand where they’re coming from, and I think Elbog has a handle on it, but it doesn’t mean that I agree with it at all. Maybe they launched on a course of action in the heat of the moment and now, two years later, the process of justice kicks in and it all seems terribly insensitive. I dunno. I just can’t get to the place that they got to when their daughter arrived. Maybe they like lawyers. I hope C is well, and you’re all settled back to normal after the hoopla. xx

  8. lisadom says:

    I have no thesaurus to hand so must repeat the comment of John – ARSEHOLES.

    If they win they better keep the money in trust ready for when their daughter sues them, for being such fucking ARSEHOLES.

    xx

    (now there’s a class action if I ever heard one)

    • Nick McGivney says:

      Just exactly what are you driving at, Hammie? You’re always so opaque with your mystical comments…

      😉

  9. Some people. So does this mean, that if any child does not live up to their parents expectations, never leaves home, never go to college, bum off their parents till they are 35 (and there are a few out there, I am sure we have all heard of one or two) can be sued?
    Half the 20 year olds in this country would be bankrupt if that were the case. No one can predict the future of their children. end of

    • Nick McGivney says:

      That’s how I was thinking too, Cathal’s Mum. I’m even thinking of suing myself for failing to become a Premiership footballing legend. Wonder would I win. But seriously, when I think of what I’ve gained since Jacob’s birth, this whole story just seems wrong on about twelve different levels. Big hugs to the C man!

      • …”But seriously, when I think of what I’ve gained since Jacob’s birth…”

        Nick,
        I think those are really some words of wisdom there. Reflecting upon one’s life and all the not so easy parts of it, that’s when we grow, deepen; the whole strengthening of metal.

  10. Mel says:

    I am of the “You get what you’re given and you love it” school of parenting. People forget that nothing is a given, and that these tests are fallible. Perhaps for a reason? Who decided it would be a good idea to exterminate all those with DS? I think the world would be a better place if we exterminated bigots, politicians, bureaucrats, the list goes on, but there is no antenatal test available!

    But I could be a weeny bit biased;)

    Having said that, we declined antenatal testing.

    And a woman expecting a baby with DS in the states whose blog I follow had hate mail delivered to her, by some nutter who thinks she should abort her son. WTF???

    • Nick McGivney says:

      I can understand the wish to have a test. It makes sense for lots of practical reasons.
      I keep my counsel on the right to choose. But when it comes to this unholy area of routine abortion of kids with genetic differences for what are quite apparently spurious financial or even cosmetic reasons, then I feel obliged to say that it is abhorrent and wrong. What could you possibly say to bigots who would actively try to mind someone else’s business, to the point of telling them to kill their unborn cnild? I guess we all carry our damages with us, but sometimes people are just dumb.

      Super news with Luke and the cardiac results. Really pleased for you guys. All the kids are precious, but results and worry and achievements just hit a higher mark sometimes for the special ones. If only the bigots you mentioned had an eighth of an understanding of that.

  11. Christine says:

    Bono would of course write a song about it.

    These wrongful birth suits really sicken me. Bad enough that abortion is the “Get Out of Jail Free Card” in the Monopoly game of reproduction when things don’t go exactly as planned, but now using the courts to further people’s right to entitlement. Yes, it would be wonderful if we all had healthy, able children, but it doesn’t always work out that way. If you aren’t prepared for children costing you money, or coming with their share of uncertainty, you shouldn’t reproduce.

    Yes, it is painful when things don’t go as planned. Worse, when you are told by doctors that everything is fine, only to find out that it isn’t, but hell how many of us have been through that? When I think of the information I was given by my doctors during my last two pregnancies, of how wrong they were on so many fronts, I get very angry. A part of me would like them to pay for the added anxiety they caused me, but not once did I consider suing them because I didn’t get the baby they told me I was going to get.

    I hope the courts give these parents nothing because that is what they deserve.

    As far as the added cost of raising their daughter, they have no idea she is going to cost more than raising any other kid. So much early intervention services are covered by the state and by insurance. She may be able to work and earn her own way. The government will continue to provide support when she is an adult. I hope their daughter is healthy and if her parents do win, the money is put away for HER future and not used to make her parents feel better.

    Gosh, I hate that we need to raise our kids in this world sometimes.

    • Nick McGivney says:

      I can understand that anger, Christine. I guess that there’s a great deal to what Elbog says, when I reflect on it. It struck me as a straightforward csase, but I’m judging it from where I am. And perhaps I don’t have that right, but nonetheless there’s a little girl’s rights being used like a tug-of-war rope here, and it’s unedifying to say the least. But to hell with my sense of propriety or what’s distasteful. I ask myself now how they would play the cards if they were given the chance to do it all over. The course they embarked on here seems to suggest that their third daughter would never make it as a rerun. That’s the only conclusion I can draw from the action, and it’s hideous.
      What we have is precious. Give that John and his sisters a big hug from me. You can draw the line at hugging Boss man i guess. 🙂

  12. jonashpdx says:

    very nicely said. as my wife recently said when an acquaintance had “mixed” results on early prenatal testing, there are only two real questions to consider:
    one, do you want your child?
    if yes, then your second question is only do you want to know ahead of time about any possible disability so that you can better prepare yourself?

    all other considerations are just so much bullshit. as many have said above, life is random, life is a crapshoot, and no one knows what’s coming to them, no matter how much you may try to believe differently. all you can do suck it up.

  13. elaine says:

    Just came across another appalling example of how parents have decided to sue, after the results of prenatal testing were inaccurate. http://cbs3.com/consumer/baby.sex.test.2.1046329.html
    6 New York mothers have decided to sue the makers of a baby sex test, which determines the sex of the baby as early as 5 weeks after conception. If your child came out the ‘wrong’ gender, that should be the least of your problems. These parents should really think about all the people who can’t have kids, before selfishly complaining that their kids aren’t quite what they hoped for. Nothing is 100% accurate. There are NO guarantees. I really hope these people lose their cases, so it will prevent more lawsuits. At least this way, more money can be put into developing better services for disabled people and educating the professionals who work with them.

  14. Monica says:

    I think I could have written all these comments, totally agree with everyone!! This story makes me sick! Hmm and they are afraid they might be perceived as heartless!!?? This tells me they know what they are doing is totally wrong!!!!! Sad, sad,sad!!!

    Jacob, you are too cute!!

  15. Had to re-read, I thought they might be from California. I’m so sick of this litigious society; trying to get a quick buck. No wonder medical insurance is out through the roof. This is not a case where the doctor was negligent; this is a case where they didn’t get their designer baby.

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