What the Levy Wrongful Birth Case Told the World About Down Syndrome

Wrongful Birth?

The recent “wrongful birth” case of the Levy family bothers me on many levels.

I want to understand how loving parents could rationalize filing a lawsuit claiming that their daughter’s birth was wrongful. I don’t want to judge them or the jury that awarded them $2.9 million – truly, I don’t. I sat on this story for awhile, hoping that the urge to post about it would pass.

It didn’t.

I’ll stipulate that they have a case for medical malpractice.

Let’s assume for the sake of argument that the testing was screwed up. That clears the jury (though I have a sinking feeling that some, if not all, of the jurors bought into the faulty premise that a life with Down syndrome was a life not worth living).

I’ll also stipulate that the Levys love their daughter, Kalanit, every bit as much as I love Nathan.

Some have insinuated that the Levys don’t love Kalanit, but I’ll take them at their word.

Many others have expressed their views on this case. A few of the sentiments include:

  • Kalanit will more than likely know that her parents consider her to be a burden.
  • Kalanit’s two brothers will learn, if they don’t already know, that their parents consider their sister to be a burden.
  • Doctors will more aggressively press for more prenatal testing, and likely for more abortions of imperfect children.

Good points all.

But never mind all that. Whether I agree with their choices or not, the Levys are within their rights to raise their children as they see fit, and doctors already press for prenatal testing. Instead, I want to focus on the bigger picture.

What did the Levys say to the world through their lawsuit?

  • They’ve promoted the false stereotype that people with Down syndrome aren’t capable of living independently or contributing to society in a productive way.
  • They’ve lent credence to the idea that people with Down syndrome not only don’t contribute, but are a burden to society. When society hears that message from parents in the trenches, rather than academics, it’ll carry more weight – especially to those people who already believe it.
  • They’ve advanced the outdated meme that families are better off not having a child with Down syndrome, despite a great deal of evidence to the contrary.
  • They’ve emboldened society to label parents who weren’t willing to abort as genetics scofflaws for choosing life. Not only will our children be marginalized, but we, their parents, will be, as well.
  • They’ve encouraged people to view parents of children with Down syndrome with disdain because we didn’t do the responsible thing and abort our “burden to society”.
  • They’ve thumbed their noses at the entire Down syndrome community – you know, the people who would have rallied around their family to ensure their daughter is included and accepted in society.

The Levys have indicated that they intend to give Kalanit every opportunity that their two sons have. Ironic, since many of the opportunities Kalanit will receive are the result of years of hard work on behalf of self-advocates and their parents – hard won battles against the very stereotypes that the Levys have perpetuated through their lawsuit.

It’s a bitter pill to swallow.

The Levys probably believe they are doing the best thing for Kalanit. Financial security is likely paramount in their minds – I know because it’s important to me, too. But in taking this extreme step to protect Kalanit, they’ve done a tremendous disservice to the Down syndrome community – including their daughter. Not everyone is cut out for advocacy, to be sure, but the Levys have become anti-advocates.

They have sacrificed our community on the Altar of Discontent, rather than graciously accept the hand that they were dealt.

It’s easy to be gracious when things are going your way. If you never face adversity, you never have to make the hard decisions that prove the strength (or weakness) of your character. But sometimes, sh!t happens. Children are born prematurely, contract deadly diseases, suffer debilitating injuries, or have chromosomal abnormalities, like Down syndrome. And, yes, sex does sometimes lead to a pregnancy you weren’t expecting.

I get it – I’ve been there.

I don’t claim to be perfect – my faults are many, to be sure – and my instincts, like most people’s, are inherently selfish. I’ve done my level best to empathize with the Levys, knowing that the choices we must make as the parents of special children often have no clear-cut answers.

But my empathy for their situation will only take me so far, knowing the irreparable damage they’ve done to our community.

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What are your thoughts on the Levy wrongful birth case? Please share them with me in the comments.

Comments

  1. says

    My sentiments exactly but I think the Levy’s have taken this a step further, not only have they done all of this to the Down Syndrome folks but ALL people with disabilities. My daughter has Rett Syndrome, there is prenatal testing for this if you have already had a child with the disorder – since it’s a very rare disorder. It’s crazy how people are so quick to throw away children still in utero but call it murder and unthinkable after the child is born. There are no prenatal tests to see if your child will get hit by a bus or be in a terrible car accident that would render them dependent on others. I just can’t believe how troubled this society is, I worry about our children growing up in this society, how much worse can it get? Thanks for posting about this. LOVE your blog!!!

  2. says

    Oh Andi. I’ve had the article about the Levy’s open in my browser for over a week, wondering just how on earth I can formulate a response. I just can’t seem to find words. Maybe I don’t feel qualified because I’m not the parent of a child with DS. But one of my best friends had her daughter and was gifted a DS diagnosis at birth. I look at her and can’t fathom them doing anything like this, even if financial security was the true goal. I feel like they’ve essentially said, “money is more important to us than our children, all our children, knowing they are valued.”

    Honestly I can’t put together coherent thoughts on this because it makes me so incredibly sad and angry and hurt all at the same time. In the last few days I’ve found myself dreaming I was overseas adopting a child with DS and the fact that this sort of thing is going on in our own country with the implications running rampant through the whole scenario makes me so very sad.

    I’ll take their “burden” from them any day.

  3. says

    This story also made me very sad. While I don’t have a child with DS or any children at all, I do have 3 or 4 friends that do have children with DS. It’s very sad that some people see it as a “defect” when in reality anyone I have ever known with DS has been simply wonderful, I can’t say that for 95% of the “normal” people I know.

    I don’t believe they even had a medical malpractice case. We all know when we go in for medical treatment that there are risks – we are not guaranteed that all tests are right 100% of the time. If patients keep filing suits for tests that are false or not correct we run the risk of either way more testing – which increases risks in and of itself, or we run the risk of the medical establishment not doing testing because they risk getting sued when the tests aren’t correct.

    Be it gaining weight from eating too many cookies or having a child because you chose to have sex, learning to accept and live with the consequences of your actions is something we could us a whole lot more of in our society. When we learn to accept our lives as they are and stop blaming others we will also become a whole lot more gracious to those around us. We’re all flawed, none of us is perfect, a child without DS is no more perfect than one with DS and it really irks me that this situation says that they are.

  4. says

    By the way I’d also argue that the case for medical malpractice is bunk too, since no test is 100%.

  5. Wendy says

    I love your sharing so much Andi. I can’t imagine what this story does to your efforts and your heart. I am working on my own piece on prenatal testing. It is a complicated issue for many of us. I won’t opine on this case as I don’t know the facts well enough. I can only imagine the fallout must hurt greatly.

  6. Andi says

    For the record, I also believe that the case for medical malpractice aspect is bunk, but from what I’ve read on the case, the jurors were fed doom and gloom and lots of clinical/technical speak that likely fed into their ignorance. Although I don’t agree with the jury’s decision, I can at least accept that *maybe* they just didn’t know any better. It breaks my heart, but I think that’s our reality.

    The Levys, on the other hand, have had four years of education. They should know better.

  7. Silvia says

    Our family was also blessed with a daughter who is living with Rett Syndrome and I THANK GOD for her every single day – she is the light of our lives. She has brought to our lives so much joy and love and forever friends. She came in to our lives as a complete surprise and I cannot imagine a world without her. While the thought of blaming the Dr’s after our diagnosis and wanting to “go after them” consumed us for a little while, one day we woke up to her HUGE smile and wet kisses and pinching hugs that at that very moment we realized God had placed her in our arms for a reason. She teaches the world about love and patience and compassion every moment she is around others. I pray that the Levy’s find some sort of peace as I cannot imagine this road has been an easy road for them. I pray that they wake up one day and realize how absolutely blessed they are to have Kalanit in their lives.

  8. Kelley says

    This story makes me sad on so many levels, because I have been there and had test before my baby girl was born that were wrong. I did not have an amino because I didn’t feel the risk of losing my daughter was worth it just to see if she had Down Syndrome. All my other test came back that my baby girl did not have any strong or soft markers for Down Syndrome. The only test that ever came back positive was my QUAD screen. No my life is not easy not because I have a child with a disability but because I have 3 beautiful girls and work full time. We are very busy and I wouldn’t trade my life for all the millions in the world even though it would be nice to have a little extra money. Here is what I do know those test did show me: my baby girl was healthy and even after birth when it was detected that she did have some cardiac issues they were minor issues and we had some scary moments in the hospital with some blood work and then we had to battle to get her to gain weight. But here is what those test didn’t tell me: my daughter would roll over at 2 1/2 weeks and never stop, that she would be a mover, that her first word would be “Love You” to her Daddy at 7 months, that she would learn to climb the stairs at 6 months, that she would be full on crawling my 10 months, walking while holding on to stuff by 12 months and finally taking her first independant steps by 16-17 months, that she would know the sounds and gestures of 10 animals sounds before age 2, would know and use sign language, would feed herself by 20 months using a spoon, that a developmental specialist would look at my daughter at 12 months and say ” No one every told you that you had Down Syndrome and your are not suppose to be doing this stuff'” that my daughter would know at least 2 body parts by age 1 and now is up to 6. I can go on and on all the stuff those tests that were wrong didn’t tell me. My daughter is not and never will be a burden in our family. My best friend gave her the name “Sunshine” because at my friends darkest hour after her father’s tragic death, my sweet baby girl brought my friend that much needed Sunshine. I will not every undesrtand this lawsuit because never once did that ever enter in my mind, but I think this lawsuit has opened up “Panora’s Box” for more lawsuits to come and yes I believe it has done a disservice to all of us fighting for our children to receive respect and for people to not look at us with pity because we have a child with a disability. I will never claim to be the perfect Mother and I am sure my oldest will tell you I am the meanest but there isn’t anything I wouldn’t do for my girls and I know my 2 oldest will make sure that their little sister is treated with the respect she deserves. My oldest is very sad over this case and just only learned the other day that her baby sister is the lucky 10-15%, because she is writing a speech on the Buddy Walk and asked why do parents “kill” their babies because of that little extra chromosome.” I showed my oldest her sister’s test results and she said “that little thing right there is what makes her unique and I just don’t understand why it scares people.” All we can do is to continue to spread the word that a diagnosis of Down Sydnrome is not a death sentence.

  9. Rosemary says

    Thankyou Andi and others. I have not been able to put into words my feelings on this case other than it is wrong.
    My gorgeous James is 16. Yes he has been a challenge at times but so has his ‘normal’ brother.
    He wasn’t ‘picked up’ before he was born and i am glad for that. He brings so much happiness into the lives he touches and so much fun. I don’t know what the future holds for him or for his brother, i don’t have a crystal ball but i know that even though he’s not the most advanced person with DS he is a very much worthwhile human being and we love him! I cannot understand how the Levy’s feel now or how they will in the future and i don’t believe they have any idea what they have done other than be selfish.

  10. says

    Thank-you for addressing this emotional issue so eloquently. I agree whole heartedly that they took a very public platform and made a very loud and damaging statement and people are listening. If it’s true that securing finances for raising their daughter was their ultimate aim, I so wish someone had come along side them to show them what a compassionate and resourceful community Disability World can be. I remain hopeful that people will hear the counter messages from people like you, with blogs like this, and kids like ours living side by side with “typical” kids..every child is a treasure.

  11. says

    I whole-heartedly agree with this: “They have sacrificed our community on the Altar of Discontent, rather than graciously accept the hand that they were dealt.”

  12. says

    I have never even looked at a blog before. My first time. Timing is everything. I am a single mom of a beautiful son, Luke Andrew.
    I chose to have an amnio to know my child, not to decide if he was allowed to be born. When I learned the amnio results, I was told very clearly that I should terminate Luke. Terminate a life that Ihad been told was impossible for me to give!!!
    There is not a day, not a moment hat I do not thank God for Luke. He is my one true love.
    Wrongful Life…I don’t get it. This world is so strange. Wrongful Life. Wrongful death. How about RIGHT AND WRONG? What ever happened to that simple concept?
    Luke is such a blessing. If every family had a special child such as we have been blessed with; well, perhaps there would be peace on earth. Our children are gifts to be
    shared. Of course I was devastated when I learned my unborn son had down syndrome. We all pray for that “perfect” child. Then, I looked up the word “perfect” in the dictionary. Perfect? If only I had the capacity to give unconditional love and forgiveness to everyone, perhaps I could take one tiny step toward self improvement. People strive to find happiness all their lives. Some never find it. Yet, by the grace of God, our children are born with it. Wrongful life? Wrongful words spoken by “professionals” who are simply…wrong.

  13. says

    I was wondering if you were going to take up this issue!! I tweeted the verdict and thought about mentioning you, but then I thought I didn’t want to be the one getting your dander up! ;)

    But I’m glad you did. I think you were spot on here. Though I have to admit, if there were a way to get $3 million to help with Malachi’s expensive lifestyle (lol) I’d probably go for it even if it meant screwing over the community that I didn’t yet feel a part of. Especially in the early weeks, which I’m sure is when they started. They might even regret it now, but once the wheels were in motion, it probably would have taken some serious soul-searching to stop.

  14. says

    Forgive me for carrying on, but I have been thinking about this all day long. We all have our choices to make. My son is 14. He is independent. He cooks he cleans he has friends he shops. He does laundry he plays the electric guitar which he taught himself by finding an on line lesson series. He is a typical teenage boy. He is so special and I am incredibly proud to say I am his mother.
    What would ever cause parents to isolate their special child by talking this action? It is not for me to judge. I can say that I am a single parent who has never received one dime from anyone I put my son first. Oh I’m just going to say it… How incredibly self centered and ignorant these parents are. I’m quite sure they look for lawsuits and see their child as a meal ticket. Poor child. You know that there is a long long waiting list to adopt downs children. I’d be honored to have another blessing. All these parents looked at was how to NOT be bothered and involved. They obviously don’t want to be parents. That’s all it is…parenting. That is how you raise any child to teach them how to be independent. ANY child. These people have isolated their child. I could tell you more about how Luke came into the world, and anyone reading this would understand why I am so disappointed with this choice. I will close by saying, I will pray for this precious child who was given as a gift.