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Saturday, April 14, 2012

Wrongful birth?

I'm sure you've heard of a wrongful death suit, but what about a wrongful birth suit?

In early March of this year, a couple in Oregon filed suit against a doctor for not disclosing that their daughter had Down Syndrome. They said that if they had known, they would have terminated. This is obviously raising a lot of eyebrows. Even some pro-choicers are saying that even if they would have terminated, why would they file such a high profile lawsuit just to have their child read when she's older that her parents would have terminated her if only they had known her fate. However, the couple is saying that they only filed the suit to secure her financial future.

Of course when a couple is faced with a diagnosis such as Down Syndrome, there are endless factors to consider. For example, will they be able to financially support a special needs child. How will it affect the life of any other existing siblings? Are they mentally prepared for such a challenge? How bad are the child's defects currently, and how bad are they likely to get? But this couple didn't get that chance. In 2006, the couple paid $2,500 out-of-pocket for a CVS (Chorionic Villus Sampling), which came back normal...indicating that their daughter would be born "normal" and healthy. Two ultrasounds in the following weeks noted abnormalities, but they were reassured that their daughter did not have the trisomy. Clearly, the CVS results were misread, and not further investigated once abnormalities presented on ultrasound.

The couple in the center, the Levy's, have not said why they would have terminated the pregnancy if they had known (though I'm guessing finances would have been a factor), but they are relieved, to say the least, that they won their case. They were awarded $3M to help with the lifetime of costs that will need to be paid. Experts have told the Levy's that their daughter will never be able to support herself or live independently.

In my opinion, people are looking at this the wrong way. These people were not given the chance to properly prepare for the challenges they, as a family, or their daughter would have. Since they were not informed, they sought financial compensation to aid in the raising of their special needs daughter. It was ballsy of them to admit they would have terminated, and they're definitely reaping the backlash. But I don't for one second think they were out of line to fight for help with their daughter's care.

What do you think?


  1. I've looked for somewhere to email you, but I can't seem to find one. As a fellow researcher on this topic, I want to advise you that I don't think you've gotten all the relevant perspectives on the issue of late term abortion and disability. I believe that your research would benefit from reading the essays on disability and abortion in the 2006 Disability Studies Reader. Both writers are pro-choice women, yet agree that abortion has been used in a eugenic manner where disabilities are concerned. This is a widespread concern in the disabled community. Moreover, Wrongful Birth lawsuits send the message that disabled people are better off not being born, and that such parents are entitled to compensation. This is the most pernicious form of bigotry. So, I strongly advise you to interview some people in the disability rights movement and get our thoughts on this issue. You can read one of the aforementioned essays here:

  2. If the child has mosaic Down syndrome, which doctors said she did, it is not as cut and dry. With mosaic, some cells have the trisomy, while others are typical. It can some times take many cells tested to see the trisomy cells. So while it seems cut and dry to you, it is actually not. There is a reason why these tests are not 100% accurate.

  3. Oh, and if you would like to learn more about mosaic Down syndrome, you can to their site.

  4. I never said that it was a cut and dry issue. I don't think that any prenatal diagnosis is. But the issue here isn't the complexity of the diagnosis. It's the fact that the parents had planned to terminate if it was found that there daughter did have DS. I haven't read anywhere that their decision was dependent on what TYPE of DS she was or wasn't diagnosed with.

    And are you saying that these tests are not 100% accurate so that parents can't terminate based on a diagnosis? I'm a little confused by that statement.

  5. What I am trying to say, is that it is harder to diagnosis mDs because sometimes due to the fact that typical cells come up in testing, it can be missed in the testing. So for example, if a mother gets her child's cells tested, they do 20 cells. If they have regular T21, they will see the cells have 3 copies on the 21 cell. If they have mosaic, all of the cells could come up typical. Some people with mDs only have 20% of cells that are trisomy. Some have 50%. Some have 99%. Some have 1%. All over the board. So if they test, and not a single cell comes up with T21, it is because only the typical cells came up and none of the T21. There is nothing the doctors could have done about that. So what I am saying is this. If a parent gets a clear sign, that the baby does not have mDs or T21, it is not 100% certain they do not because the baby may still have it, and the test just did not show it. So in this case, when the lab did the testing, all typical cells came up, because the baby has typical cells, along with Ds cells. So that is why the doctors did not know. Not because they were negligent. It has happened to others, and it will happen again. Some people with mDs only have t21 cells in the heart. No one could know that unless they took the cells from the heart, and tested them. But people would not do that. Some only have them in the skin. mDs is random, and can be missed. It is missed for most families. Most families do not know until their child is much older, due to this. So this parent did not experience anything different that many of us. I did not find out my daughter had mDs until she was three. It happens all the time. Having said that, it would have been their right to terminate, if they wanted to, but it was not the doctors fault. It is the reality of the diagnosis. Maybe one day they will be able to test to full certainly, but right now, even the amnio is not 100% accurate. It's all science.

  6. Honestly, that is terrifying. I can't imagine having such a serious diagnosis going undetected, even for years after birth. I have always said I would never be able to terminate my own pregnancy unless something was very very wrong and the baby was actually suffering inside of me. But I'd still like to know and be able to prepare for upcoming challenges beforehand.

    Thank you for clarifying your comment. I appreciate you taking the time to answer it =)

  7. You're welcome. It can be terrifying. However, also not so much. Life with T21 or mDs is surprisingly not much different than life with typical kids. Most parents are surprised to learn that after they finally have their children. It is often the thing we hear most from parents who continue their pregnancy.

    When you get the diagnosis for your child, T21 or mDs you do fear what is to come, and shock takes over. But over time, after your child is born, you realize it is not as big of a deal as you thought it was. In fact, it is not a big deal at all. Truly the hardest part of the diagnosis is the diagnosis itself. Part of why we all try to reach out to new parents is to help them through the beginning diagnosis. Then we all just become very good friends. :) Most of us find each other, and pretty soon you realize that your child is just a child. Today, more than ever, all of the medical complications that can happen, are easily fixable. My daughter had her heart repaired. I was scared. But the doctors know what they are doing so well, that the fear is replaced by confidence. Any digestive problems are not as big of a deal any more either. The repairs go very well. Our kids get incredible therapies, and today more then ever they are doing things that people never thought they could do. Getting married, going to college, getting jobs. The horror stories you hear are just that, outdated misinformation that is said about our kids. For the most part, they are like other individuals in this world, just living out this wonderful life.

    As far as mDs is concerned, many mDs diagnosis go undetected. You can think of it a lot like autism. That goes undetected all the time, until the child starts to show signs of autism. mDs can be like that. Many with mDs do not even have features of an individual with Ds. While others will be diagnosed with Ds because of the features, and they will actually have mDs. Though their features are like Ds, cognitively they will function at almost typical levels. It is only realized that they do not have regular T21 later when they are tested again, and not all the cells have T21 cells. The prognosis for mDs is often better than regular T21, not always, but most of the time, so often the child will excel in areas that the parents did not anticipate for the diagnosis, so they will have their child retested, and they will find that the child has both typical and T21 cells. It is all very interesting. I recommend you check out the mDs site I shared in my first post. It is pretty cool to learn about. Thanks for letting me share this, and clear this up. We always like when people understand our loved ones better. :)

  8. Oh, and I would love for you to see our video we put out there about our loved ones this year. This was from parents of all of the Down syndrome diagnosis.

  9. IDSC, I will be sure to check out your link today. I also plan on visiting your site. While I have heard of mDs, I clearly don't know as much about it as I do about other problems.