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Tuesday, March 13, 2012

Wrongful Birth

The big news in the Down syndrome community is the wrongful birth lawsuit from an Oregon couple brought against their doctor and hospital. 'Wrongful birth' because their daughter was born with Down syndrome after prenatal tests indicated she wouldn't be. The jury - all 12 of them - sided with the couple and awarded them $2.9 million - for the lifetime care of their daughter. (An article from 2 years ago when they filed the suit says they were seeking more than $14M. This includes compensation for the father "for the effect his daughter has had on his relationship with his wife." Can you imagine reading that about yourself?)

I am trying really hard to not judge this couple ... because I'm not in their shoes and didn't go through what they went through. Here are some bullet statements as I understand this lawsuit: 

- This wasn't a planned pregnancy; it was a surprise, or accident
- The mom was 34 at the time so they specifically opted for an early diagnostic prenatal test (the CVS)
- If there were any abnormalities found they planned to terminate the pregnancy
- CVS came back normal
- Couple of markers on subsequent u/s indicated a possibilty of Ds, but they were assured everything was fine and not advised to get an amnio
- Their daughter was born and, understandably after a 'normal' CVS result, they were shocked to be told she did in fact have Down syndrome
- Their lawyer contends the doctor who performed the CVS either took too small of a sample to be valid, or he took tissue from the mother and not the fetus
- They also contend the lab didn't realize they were testing maternal tissue
- The doctor's lawyer contends that since their daughter has Mosaic Down syndrome not all of the cells will show a triplicate of the 21st chromosome and that's why the CVS didn't pick it up
- Their lawyer contends that enough of her cells do contain the triplicate and that a percentage would have shown up in the CVS

I have no idea, or if there is any proof, that the doctor took the tissue from the mother or the fetus.

Playing Devil's Advocate for just a minute here - IF in fact the doctor DID take the tissue from the mother and not the fetus then yes, he screwed up. He made an error and the test was not performed correctly and this couple was going to make a decision based on the results of a test they believed to be performed correctly. So in theory I guess they could sue for malpractice? Or negligence?

Would it not be something similar to have a biopsy for cancer and something happened with the biopsy or tissue and be given incorrect results? Wouldn't someone sue for that?

So I can, in a way, see why they would be upset about a test being performed improperly (again IF that is actually what happened) and have the results be completely opposite of what they were expecting.

However, having said all that, it really, really bothers me that this lawsuit is filed under a 'wrongful birth.' How can you say a child's birth is wrong? Oh, because had they known she has Down syndrome they would have aborted her. They had to say that in court, or in their lawsuit.

How awful for a child (she's only 4 now, but who knows if one day she'll realize what happened or not?) to know that she was so unwanted (and again it wasn't a planned pregnancy) that her parents filed a wrongful birth lawsuit. That your birth was wrong. That your whole essence, your whole being, your whole existence, is wrong?

According the article there also seemed to be a bit of outdated and/or misinformation given to the jurors about Down syndrome.

They were awarded nearly three million dollars, money to "cover the estimated extra lifetime costs of caring for a child with Down syndrome."

I'd love to know how they reached that monetary figure as money needed for the 'extra lifetime' costs of caring for a child with Ds. Really? That much? I'm sorry, but I just don't see it costing Joe and I over a million dollars to raise and care for Kayla over her lifetime.

It doesn't say this child has any significant medical needs or other health issues. What this does is perpetuate a false notion that individuals with Ds are a financial burden to their families and society. And I don't believe that at all. Yet that is not what the rest of society is going to think when they read the articles on this outcome. Couples will continue to feel justified in using that as a reason to terminate their pregnancy - when it is inaccurate.

More inaccuracies: 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.

Who are these experts and professionals? Where are they getting their information? This is what the court decided was reason enough to justify a nearly $3M verdict?

She will continue to need speech and physical therapy ... but for how long? I don't know of adults w/Ds still receiving these therapies (not saying they don't, just if they do I guess it isn't common knowledge.) She is 4, so from birth to three she should've been receiving therapy through her states Early Childhood Intervention program. I don't presume to know how this works in every state, but every state has this program and it should be free to the families, or at the minimum very low-cost co-payment, if at all. We never paid for any therapy Kayla received through ECI. Once the child turns 3 they (usually) continue to qualify for services through the public school system. Again, that is free.

There might be instances where the parent chooses to receive school therapy and private therapy in the home or a therapy center that may incur out-of-pocket expenses, but there are usually programs to help off-set that as well ... like if your child is on a state Medicaid waiver.

Experts also testified she will face a "concerning list of possible medical problems over her lifetime." The keyword to me is 'possible.' How can you award compensation for possible medical problems? What is this 'concerning' list of medical problems? Any one of us could face a list of 'possible' medical problems.

Then there are the professionals who told the parents she will likely never be able to live independently, or earn a living.

How do they know that? I don't know the percentage of adults with Ds who do live independently, or even semi-independently, and/or earn a living. It might be a small percentage, but it is still a percentage. It IS possible. I'm sure the percentage of adults with Ds who are earning a living today is much higher than the percentage was 20 years ago.

With the continued research and advancement in medical care there are much more opportunities for individuals with Ds to live on their own, or with some help. I can only imagine that the percentage will continue to rise for the kids born now. I can only imagine in 20 years life will continue to improve for those born with Down syndrome. I'd say by the time their daughter reaches adulthood she will probably have just as much chance to live on her own and earn a living.

So much false and negative information appears to have been given out in that courtroom. What a bleak, hopeless picture those 'experts' and 'professionals' painted of life raising a child with Down syndrome. What a disservice done to all these families who have been advocating for a more accurate portrayal of what life is like.

Kayla's future (just as Lucas's) is unknown. Yes we do have some legitimate fears about this unknown, about what she'll be capable of, but alongside the fear is hope. Hope and promise for her future.

If this couple was so against having a child with Down syndrome, why did they not place her for adoption (not saying that is an easy decision to make) but if they were so worried about her future why not let another family raise her.

And then there is this. They say they love their daughter just as much as their older 2 sons (although why did one article feel the need to mention that one of their sons scored in the 99th percentile on standardized tests - what does that have to do with anything?). They said they will give her every opportunity as their sons. So why not just say "thank goodness we didn't know you had Ds because we would have aborted. Thank goodness we didn't know because we wouldn't have you now. We wouldn't have this opportunity to know and love and raise you. Thank goodness you are here now because we would have missed out on having you in our family, and this is where you were supposed to be."

And if they supposedly need all those millions to raise her over her lifetime then who is going to monitor the spending of that money? If that is what they need for their daughter then I hope it is stipulated to go in to a special-needs trust so every penny of that money is indeed allocated specifically for her needs.

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8 comments:

Becca said...

Well said, Michelle. This story has been weighing heavily on my mind for the last week or two, since I heard about it. It really disgusts me. Sure, we can say we don't know everything about this case or what that family is feeling, but sheesh, the basic facts are staggering! $3m just blows my mind. Wrongful Birth just blows my mind. If they felt that put-out, they should have considered adoption, and given their daughter a chance to have self-worth.

Toby said...

>>Kayla's future (just as Lucas's) is unknown. Yes we do have some legitimate fears about this unknown, about what she'll be capable of, but alongside the fear is hope. Hope and promise for her future.

Great post, Michelle. I really identify with the part above. Sure, you don't know Kayla's future. But you don't know Lucas's (and I don't know mine) either. The future is *always* entirely unknown and uncertain for *all* of us. I may choke on a butterscotch hard candy while typing this, be oxygen deprived for a significant period of time, and be unable to speak and need round-the-clock care for the rest of my life. Awarding money for *possible* trouble in the future is ridiculous.

There's another really good, thoughtful post on this case at:

http://crybelovedcountry.com/2012/03/wrongful-birth-and-frodos-hard-quest/

Mom24 said...

I'm trying so hard to understand where this couple is coming from. I've tried to give them the benefit of the doubt. I've tried and I've tried and...I just can't.

What does this say to this poor child? What does it say to her brothers, even if she never does understand it? So sad. I think they all would have been better off giving her up for adoption.

Not a Perfect Mom said...

it's not the lawsuit or the right to choose that gets me...it's that this child will know they didn't want her...
I still say they should have given her up...there would have been a line out the door...

My Little Wonders said...

Wonderful post Michelle. This story has been on my mind since I first read it earlier this week; you very eloquently expressed so much of what I have been thinking.

Muttering Mama said...

I have tried to play Devil's advocate myself and looked specifically at the possibility/probability that the medical professionals did, in fact, mess up. And that's fine. If they filed this suit to keep the medical profession honest, then fine. But then donate EVERY CENT of that money to Romp for Research, the Buddy Walk, NDSS, NDSC, or some other affiliated group. Don't keep it. That's just disgusting.

Bonita said...

"So why not just say "thank goodness we didn't know you had Ds because we would have aborted. Thank goodness we didn't know because we wouldn't have you now. We wouldn't have this opportunity to know and love and raise you. Thank goodness you are here now because we would have missed out on having you in our family, and this is where you were supposed to be."

These were my thoughts exactly. You have a beautiful little girl. Why are you not thankful?

April said...

This lawsuit makes my heart hurt. Her family says they love her but had they known she had Ds, they would have terminated her. How someone could look at the child they've cared for for four years and get up in front of judge and jury and the world and say "we would have killed her in the womb had we known she was imperfect. But we love her now."? How? I just can not wrap my mind around this. There is so much more I could say, but perfect, chromosomally enhanced baby boy needs me. And I could use a cuddle from him and another chance to tell him that no matter what, no matter that he came as a complete surprise, he is very much wanted and loved by me. And I don't need $3M to take care of him.