Baha’i Faith: Day 9

Yesterday, news broke in a case the Down syndrome community has been watching with great concern. A couple attempted to sue a testing company for “wrongful birth.” They had an amniocentesis which is considered diagnostic and 99.9% accurate. Their amnio results came back negative for Down syndrome, but when the baby was born they learned their child does, in fact, have Down syndrome. The couple claims they would have sought abortion had they known ahead of time.

Yesterday, the verdict broke: the testing company is being held liable for this “wrongful birth,” and the family is receiving $2.9 million in “damages.”

So, since this is happening during a time I’ve committed to writing about the faith, I’m going to look at this situation through that lens – just as I should any day, right?

There is a lot to say here about how this case sets a dangerous legal precedent for the medical world. (Can I now sue ANY time I get a false positive or a false negative? That could bring the medical field to its knees – medicine is a practice, an art form – there are few absolutes.)  There is also a lot to say about how this lawsuit affirms some of the most deeply held – yet completely erroneous – beliefs about Down syndrome: that these individuals have no worth, contribute nothing, and serve only to act as “burdens” to parents and taxpayers.

Didn’t know my kid’s life was going to end up costing $2.9 million.

But anyways, I just keep going back to this family. They are being crucified in the Down syndrome community. We are usually tight knit and supportive almost to a fault. I understand the ferocity of the response – after all, these people have actually come out and said out loud they would have aborted, and they have allowed the media and the judicial system to perpetuate some pretty nasty stereotypes about Down syndrome.

However, I can’t help but wonder how this family got to this point. I keep thinking of how many people failed them along the way. How many doctors misrepresented the diagnosis? How many therapists fed them untruths? How many of their family and friends told them “sorry” and spoke only of the burdens? And when they turned, broken-hearted and lost, to the Down syndrome community – did they receive a warm welcome? Did someone tell them it was ok to be scared, frustrated, or mad about the diagnosis? Did someone walk them through the grief and help them find the beauty in their child, the light? I don’t know that we will ever know the answers to those questions, but I think they are worth considering.

To me, this represents a colossal failure of both the medical establishment and the community. To be clear, of course this family must take responsibility for their actions. Of course a lawsuit wasn’t the best way to process all they feel about their daughter and about Down syndrome. And since the worst of humanity seems to have no bounds, I am totally open to the idea that this family really is just this bad and they don’t need defending. I’m just trying to provide an alternate viewpoint while all around the internet my fellow mommas are burning this family at the stake.

Here’s how I see it: this family is lost, desperate, and obviously deeply hurting. I keep thinking of the darkest hours I had after Rowenna’s birth and I wonder what I myself would have done if I had never gotten out of that despair. This child is 4 years old, and despair left unchecked that long can do awful things to a person. I was blessed to have a supportive family. I was blessed to have doctors who understand Down syndrome enough to know my child’s life is full of potential. I was blessed to have a team of therapists who lifted me up week after week, believing firmly that my child is capable. I was blessed to have friends who rallied around me and loved my child for who she is – and blessed to meet a whole new group of friends because of Down syndrome. Isn’t it possible this family didn’t have those blessings?

So here’s the quote from the faith that practically jumped off the page when I turned to the writings to make some sense out of this awful situation.

“May you be sources of comfort to the broken in heart. May you be a refuge for the wanderer. May you be a source of courage to the affrighted one.”

This family is possibly all of these things – broken-hearted, wandering, frightened. They have done something that has irreparably damaged their relationship with both the medical community and the Down syndrome community. They are now materially wealthy but have lost their greatest asset – the loving support of people who have walked this path before them.

And perhaps they don’t care. Perhaps they are every bit as cold-hearted as this story makes them seem.

But my faith – and my heart – charge me to think better and do better than that. This is where walking the walk becomes a little difficult, right? To look at this family and offer comfort instead of hate – it’s a challenge. But one I hope at least some in the Down syndrome community are up to some day, when this initial period of anger melts into something less intense. I pray this little girl isn’t ostracized forever, and I pray that this family finds the comfort, refuge, and solace they so desperately sought through a lawsuit.

Advertisements

3 responses to this post.

  1. I can remember when I was asked about all the supposedly necessary testing that needed to be done. I told the OB I had at the time, very flatly, that no, I wasn’t going to test for anything. She got a little belligerent with me about it saying that it was necessary and that I really should know if there were any problems so I could “make the right choice.”

    I looked her square in the eye and said, “he’s going to have a disability anyway; what’s another one?” (ADHD runs rampant in my husband’s family – seriously, they all have it)

    I changed OBs not long after that and while my new one said I should have, at least, had the 5 month ultrasound, she didn’t badger me about the testing, said it was my choice, and that was that.

    I don’t even know what to say about this family that you’re talking about…I definitely see both sides of the story. I feel sorry for them in that they’ve shunned basically anyone that could have given them some guidance: the doctors because, God forbid, they make a mistake (it’s called 99% accurate because there’s a 1 in 100 chance that the test could come out wrong) and the Downs community because of the things they said regarding aborting their child had they known. It just makes me shake my head…

    Reply

  2. This post made me cry. Sure, I’m hormonal, but it’s so lovely. I struggle with being open and viewing the other side in a positive light and or sure I was one I the mamas that was burning that family at the proverbial stake. I didn’t even think to give them even a smidgen of benefit of doubt.
    Truly beautiful post, Melissa – thanks

    Reply

  3. I was mortified when I heard about the suit a week or so ago, even more so when I read that they’d been awarded $2.9 million. I don’t know. I appreciate that you’re exploring the possible other side of things – it’s only fair. And you’re right, it’s entirely possible *someone* or *many* someones along the way have likely let them down, but as you also said, this family needs to take accountability for their own actions, for their own ability to reach out into a supportive community, explore adoption, etc. – they had many options available to them, regardless of whether one happened to let them down somewhere. I don’t know much about the Orthodox community, so I’m not sure if their own faith may have played a part in it – I’m pretty sure that community can be pretty insular, and it’s possible they did not know their resources or were not comfortable opening themselves up to them.

    I also hope they find light in this eventually, and can embrace who their daughter is and who she could become. Great post, Melissa.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: