Ariel and Deborah Levy were overcome with excitement as Deborah gave birth to their first child, but this quickly turned to shock when hospital staff told them their daughter looked as though she had Down syndrome. A doctor asked Deborah if she’d had a prenatal test – a chorionic villus sampling (CVS) – and Levy said yes, because she was 34, she and her husband were concerned about the possibility of genetic disorders. A first-trimester screening showed Deborah’s chances were estimated to be higher than average for giving birth to a child with Down syndrome, at about 1 in 130. So when Deborah was 13 weeks pregnant, she underwent CVS. The Levy’s were informed the results showed they’d have a normal, healthy child, and they “had nothing to worry about.” Within days of their daughter’s birth, however, a blood test confirmed that the little girl, Kalanit, had Down syndrome. Deborah said the news was “devastating.” The Levy’s filed a lawsuit against Legacy Health, claiming Deborah Levy would have aborted her pregnancy had she known her daughter had the chromosomal abnormality. The lawsuit blamed Legacy’s Center for Maternal-Fetal Medicine in North Portland and a Legacy lab for mistakenly taking a sample of maternal rather than fetal tissue for the test. The suit faults Dr. Thomas Jenkins and lab workers for not recognizing that the tissue was from the mother. The suit also faults Legacy for reassuring Deborah that her baby didn’t have an extra 21st chromosome, even though two ultrasounds allegedly raised red flags by showing traits of Down syndrome. The Levy’s suit requests that Legacy pay for the extra lifetime costs of caring for Kalanit, estimated by one medical expert at $3 million. Experts say such “wrongful birth” cases are extraordinarily rare nationwide because prenatal tests such as CVS are as much as 99.7 percent accurate. And when the tests fail, few parents are willing to endure the scrutiny of a legal challenge. But wrongful birth lawsuits may become more common as technology advances, more women in their late 30s or 40s give birth, and millions of expectant parents come to rely on genetic testing. Several studies show that more than 89 percent of women who learn they will give birth to a child with Down syndrome choose to terminate their pregnancies. The Levy’s say they worry about future medical problems, Kalanit’s ability to interact with others and whether she will receive the extra therapy and attention she will need in school. Kalanit speaks in two-word sentences, and few persons other than her mother and father understand. Experts have told the Levy’s that she likely won’t be able to live on her own or support herself.

Anna and Cory Miller filed a $6.25 million lawsuit claiming doctors conducting prenatal tests failed to detect a serious genetic disorder in their child. The suit claims that medical staff at Oregon Health & Science University and Kaiser Permanente misinterpreted a January 2010 amniocentesis and other pre-natal tests, leading them to tell the Miller’s that their future child wouldn’t have major disabilities. Based on that information, the Millers chose to continue the pregnancy.
Their daughter was born May 28, 2010, and days later they learned she had Charge syndrome, a condition that often includes heart defects, breathing problems, swallowing problems and hearing and vision impairments. It occurs in about one in 10,000 births, and can require months of hospitalization, repeated surgeries and years of developmental therapy and extra care. As is customary in “wrongful birth” lawsuits, the Millers declared that they would have terminated the pregnancy had they known their daughter, now 2, would be born with major disabilities. The suit seeks $2 million to pay for medical care, therapy, medication, educational expenses and the extra costs of raising a child with a disability, $3 million for their daughter’s living, medical and therapy expenses once she becomes an adult, $250,000 for wages Anna Miller has lost and will lose in caring for their daughter, and $1 million for “the emotional distress, anxiety and depression experienced” by the Millers. Adapted from Oregonian, Thursday, May 31, 2012, C4