Deborah and Ariel Levy, the parents of a 4-year-old girl with Down Syndrome, have been awarded nearly $3 million by a jury. The Levys had sued an Oregon hospital after doctors at Legacy Health told them that prenatal tests said their child would not have the developmental disability, says KATU news. Late last week, jurors said that the “negligence of hospital workers [had] led to incorrect results.”
The couple, who have not commented publicly on their lawsuit because they are “worried about the backlash they could get over such a controversial topic,” sued the hospital for millions, the amount they say will be needed to care for their daughter during her lifetime. They contend that doctors at the hospital “repeatedly advised” them that a test of their unborn child had “definitely ruled out Down syndrome” and that other indicators were “not reliable.” The doctors, say the Levys, were “negligent in their performance, analysis and reporting.” Had they known their daughter would have been born with Down Syndrome, they would have aborted the baby.
The case brings up some very complicated issues about prenatal testing and disability rights. KATU quotes Patricia Backlar, a professor of bioethics at Portland State University, who notes the importance of prenatal testing as “you want to make sure you’re prepared as well as you can be in case something is awry.” The reading of such tests can, though be “complex,” she says. The Northwest Down Syndrome Association‘s Angela Jarvis-Holland also points out that, while there have been advances in prenatal genetic testing, there has been “no huge increase in good information on what life can be like” to raise a child with Down Syndrome.
Certainly more educational and other services exist now for children with Down Syndrome and other disabilities. Currently some 80 percent — even 90 percent — of parents who find out that their fetus has tested positive for Down Syndrome choose to terminate the pregnancy. With fewer children with Down Syndrome now born, some parents and disability advocates have been emphasizing the positive aspects of raising a child with a disability.
In a press release, Dr. Jeff Myers, the president of Summit Ministries, refers to the Levys’ “wrongful birth lawsuit” in criticizing a recent article in the Journal of Medical Ethics in which two Australian professors, Alberto Giubilini and Francesca Minerva, argued that “after-birth abortion” should “be permissible in all the cases where abortion is, including cases where the newborn is not disabled.” The professors cited Down Syndrome as an example, noting that ““such children might be an unbearable burden on the family and on society as a whole, when the state economically provides for their care.” Dr. Myers responds that such a “barbaric argument is the logical outcome of a pro-abortion stance” and that to say that a child “can be aborted—killed—because circumstances aren’t perfect will cast our society back into the eugenics debate that the Nazis exploited so effectively to kill those they deemed undesirable. ”
As the mother a child with disabilities, with autism, specifically, I more than understand the Levys’ fears about raising a child who will need care and extra support throughout her life. There is currently no prenatal test for autism as there is for Down Syndrome. I do remember the moment back in 1997 when I was expecting my son and the doctor spoke to me about Down Syndrome testing. Women need to have the right to choose. For myself, I did know that, regardless of what any testing results showed, I was having the baby I was carrying and we would take care of him.
15 years later, I can vouch that it is an understatement to say that raising a severely autistic child is difficult. We worry every day about Charlie’s future, especially after we gone. But by no means do we ever consider that Charlie is a “burden” — life with him is full of very deep joys and lots, lots of love.
Giubilini’s and Minerva’s article has sparked quite a lot of controversy. One important point that is getting overlooked in the pro-life rhetoric about eugenics and aborting disabled babies is that, right now, our society does not do nearly enough for adults with disabilities to ensure that they lead meaningful, productive lives and are not simply “warehoused” in institutions. While a child with disabilities has the right to an education thanks to the Individuals with Disabilities Education Act, all of that ends when a child turns 21. Services for adults with disabilities in the US are less well-funded and, in many cases, non-existent or of such poor quality and serviced by such inadequately trained staff that many adults with developmental disabilities are left to sit at home and do nothing.
If we actually improved the quality of life for individuals with disabilities throughout their lifespans, and if we keep broadcasting a message of acceptance and hope about life with a disability, lawsuits like the one in Oregon should not have to happen.
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