Wrongful Birth Lawsuits & Prenatal Testing

When Deborah and Ariel Levy of Southwest Portland were expecting their third child, they underwent chorionic villus sampling (CVS)---prenatal testing---at the Legacy Center for Maternal-Fetal Medicine. Levy was 34 years old at the time. After getting the results, a doctor said that they could "'definitely [rule] out'" their child having Down Syndrome (the test is said to be 99% accurate). As reported in the June 13th Oregonian, the child was found to have Down Syndrome within a few days of her birth. The Levys are now seeking more than $14 million to raise her and provide education, medical care, and speech and physical therapy, as well as money for her life-long living expenses.

At present, there is no prenatal test for autism. But there could be someday and what will parents do with the results? What if, as in the case of the Levys, the test results are negative, but a child, once born, is autistic?

A decade-long study conducted by the Washington State Department of Health indeed found that 28 percent of women who "knew they'd give birth to a baby with a cleft lip or mouth deformity" chose to terminate their pregnancies. 85-90% families who learn that they are expecting a child with Down Syndrome choose to abort.

What should parents do if they find out that their unborn child has a disability or serious health problems? It's a potentially explosive topic (as seen in the fallout after one momblogger faked being pregnant with a terminally ill child.) The Oregonian article contains a number of quotations the capture the ethical and moral complications posed by prenatal testing for disabilities.

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, on why there are fewer than ten such "wrongful birth lawsuits" per year filed in the US:

"The reason they're rare is you are forced to take a position that's very awkward," Caplan said. "Parents don't like arguing it, and courts don't like hearing it."

Parents must be willing to declare "we feel burdened to have this child," Caplan said.

And in order for the suits to succeed, courts must be willing to rule that "it's better not to exist and give damages for having to exist," Caplan said.

Angela Jarvis-Holland, Executive Director of the Northwest Down Syndrome Association in Portland and the mother of a 10-year-old son with Down Syndrome:

"Because what constitutes a good life?" Jarvis-Holland said. "I don't think doctors can answer that in a two-minute conversation."

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"Down syndrome is really the canary in the coal mine," Jarvis-Holland said. "It will be everybody's question before we know it."
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"If you keep growing the list, where and when do we grow uncomfortable about that list?" Jarvis-Holland said. "I'm not sure where this is taking us."

Jarvis-Holland speaks about a "'tyranny of perfection'"---"designer baby syndrome," if you will---if parents are able to "pick and choose" what they want in a child or not.

Just typing that sounds awful, as if there's a "menu of options" one can "select from" regarding one's unborn child. The Levys' lawsuit raises huge questions. Prenatal testing puts us into perilous ethical waters as we face decisions that I'm not sure many of us are really prepared to make. I understand about the need for sufficient resources in raising a child with a disability, but I shrink from pronouncing Charlie to be a "burden" and to say that it would have been "better" had he not existed. And even if Charlie had not been born autistic, Jim and I would have been equally wary of having some preconceived notion of what he "should" be like, of what would make him "perfect."

Obviously, Charlie was perfect from the moment he was born, conceived, kicking me in utero, letting me know he was there.

More in the June 15th Disability Scoop