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The Good, the Bad, the Ugly: Responses to Readers about Down syndrome and wrongful birth

I'm sure some of you have skimmed the comments over on the Huffington Post from last week's article about Down syndrome and wrongful birth. But for those of you who haven't, here are some of the best and worst, and one of my responses. (I should add that my response here is very matter-of-fact. I wrote a post in September of 2010, in the aftermath of a series of posts on the Motherlode blog about prenatal testing, in which I explained my emotional response to these comments. I stand by what I said then, and if you're interested, go to When the World Comments on Your Life.)

In reference to Penny being in an inclusive school setting: "It would probably be more beneficial for everyone if your daughter was in a facility more suited to her needs."

A great point about the potential benefits of prenatal testing: "Let's replace DS with Spina Bifida. There are now amazing surgeries that can be performed in utero that would change babies lives dramatically. Without the information in early pregnancy however, the surgery cannot be performed and once the child is born, it is to late. It's even too late if it's too late in pregnancy."

Individualism run amuck:  "I plan on having one child, and I'm sorry but being that that is my, and my fiance's goal we would terminate pregnancy if there was an impeding issue. One day I would like to have grandchildren (or one depending on what my child chooses for themselves) but that won't happen if we have a disabled child. The world is already over populated, so planning the size of your family is just as important as choosing who to start one with. If I'm giving myself one shot at offspring you shouldn't thumb your nose at my choice to make the most out of what we decided our family was going to be."

The social construct of disability: "I have a concern that society's stereotyping of and prejudice against individuals with disabilities takes away from a parent's ability to make an informed decision. When much of society views individuals with disabilities as a "burden," then a parent informed that their child has Down syndrome might choose to abort without actually knowing the full story. Before making that decision, expectant parents should talk with parents of Down syndrome children. Then they can make a more informed decision.We, as a society, are horrified by parents wanting to abort based on gender, but support abortion based on an extra chromosome. As a big supporter of community living and parent of a daughter who has Down syndrome, I worry about how society will value the life of my child if it embraces the abortion of people similar to her. It makes me sad and angry and drives me to spread the word even more about how an inclusive and empathetic community makes the world a better place."

A critique of my argument: "Wrongful birth lawsuits are more in depth malpractice lawsuits. And she is incorrect by saying that the Levy's were given tests (plural), from the articles I have read on the case they were given one test and despite the markers being there for this disorder they told her to stop worrying since that one test came back negative. She had the right to at least be offered more testing and more information and she was denied that. I see that from the authors experience having a disabled child has not been an issue but to write off these lawsuits based on her life experience is wrong. That is not the way it is for every woman. And abortion shouldn't play a part in the conversation. That is not the point of the conversation, malpractice and doctors not giving their patients access to information is the problem."

I didn't respond to all the comments, but here is one response I made:

From what I understand, the only way to proceed with a "wrongful birth" lawsuit is by making the claim that if you, as a parent, had known about your child's disability ahead of time, you would have aborted. In other words, it is not just a malpractice case saying that you wanted and should have had information ahead of time (information ahead of time can be used in various ways, including to prepare well for the birth of a child), but that you would have used that information to obtain an abortion. One of the reasons I tried to get away from criticism of the specific parents involved is because there are also systems involved–one, a system of prenatal testing that often assumes abortion of fetuses with disability is the desired outcome and two, a social system of discrimination against individuals with disabilities as manifested by many of the comments on this post already.

As far as the tests go, the Levy's tested for Down syndrome using CVS (corionic villa sampling) and it came back saying that their daughter does not have DS. It's unclear from press reports whether they tested the wrong sample or whether because their daughter has a mosaic form of Down syndrome (which means that DS is not in every cell of her body), the test result was accurate but didn't give them the information they wanted. Either way, on subsequent tests (ultrasounds), the Levy's were informed of "markers" of Down syndrome but they were told they didn't need any further testing because of the CVS. From all I can tell, and from what the jury decided, Legacy Health Systems was wrong in the information they gave the Levy's. My critique is not of the jurors who handed down this decision but rather of the assumptions that go into prenatal testing and the ignorance about Down syndrome throughout our culture.

Furthermore, it is very confusing as the mother of a child with Down syndrome to understand why $3 million was awarded in this case, unless it was a punitive statement towards Legacy Health. News reports implied that the money is intended to cover the costs of caring for a child with a disability. Another problematic aspect of this case is the misperception that it costs millions of dollars more to raise a child with a disability than a typically-developing child.

Check back in later this week for some thoughts on whether it costs more to have a child with a disability...

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