Saturday, March 10, 2012

Couple sues over 'wrongful birth' of Down syndrome child

Portland-area couple sues Legacy Health for $3 million for 'wrongful birth' after child born with Down syndrome
Published: Thursday, March 08, 2012, 9:06 PM
Updated: Friday, March 09, 2012, 12:31 PM
By Aimee Green, The Oregonian

On the June 2007 day their daughter was born, Ariel and Deborah Levy were overcome with excitement, then shock when hospital staff told them their daughter looked like she had Down syndrome.

A doctor asked Deborah Levy if she'd had a prenatal test -- a chorionic villus sampling, or CVS for short -- and Levy said yes, the results showed they'd have a normal, healthy child.

Within days of her birth, however, a blood test confirmed that the little girl, Kalanit, had Down syndrome.

The Levys filed suit against Legacy Health, claiming that Deborah Levy would have aborted her pregnancy had she known her daughter had the chromosomal abnormality. The lawsuit blames Legacy's Center for Maternal-Fetal Medicine in North Portland and a Legacy lab for allegedly botching the test. The Levys -- who dearly love their daughter, now 4 -- want Legacy to pay for the extra life-time costs of caring for her. That is estimated at about $3 million.

This afternoon, after nine days of trial in a downtown Portland courtroom, 12 jurors began deliberating in a case that gets to the core of how we view and value a life, and asks who should have to pay when that life is less than optimal. Experts say such "wrongful birth" cases are extraordinarily rare nationwide, for one, because prenatal tests such as the CVS are as much as 99.7 percent accurate and when they fail, few parents are willing to endure the scrutiny of a legal challenge. But wrongful birth lawsuits may be becoming more common as technology advances, more women in their late 30s or 40s give birth and millions of expectant mothers come to rely on genetic screenings.

Internet commenters have assailed the couple as heartless. The Levys' attorney, David K. Miller, said the couple has received death threats.

Multnomah County Circuit Court Judge Karin Immergut banned courtroom photos of the couple for safety reasons.

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.

Miller, the Levy's attorney, contends that Dr. Thomas Jenkins removed maternal tissue -- not fetal tissue --from Deborah Levy's womb. The suit faults Jenkins and lab workers for not recognizing that the tissue was from the mother. The suit also faults Legacy for reassuring her that her baby didn't have an extra 21st chromosome even though two ultrasounds allegedly raised red flags by showing traits of Down syndrome.

Legacy's attorney said Jenkins and other staff followed proper procedures and weren't at fault. Attorney Robert Keating said the CVS found only normal cells because Kalanit has mosiac Down syndrome -- meaning a significant number of her cells don't contain an extra 21st chromosome. Keating pointed to an analysis of Kalanit's cells -- taken after birth -- that showed nearly 31 percent are normal.

But the Levys' attorney told jurors they should discredit that analysis because it had been done by a Legacy lab looking to defend its legal position. Miller argued that 100 percent of the cells analyzed in the CVS were normal because they were Deborah Levy's cells. Meanwhile, other samples of tissue taken from Kalanit after she was born show an insignificant number of normal cells, less than one or two percent.

The attorneys called upon a series of medical experts with each side criticizing the others' experts as ill-informed.

Ariel Levy, 39, is a civil engineer. Deborah Levy, also 39, is a dental hygienist.

The two met in preschool, went to Wilson High School, and later, to a Boston-area college. They started dating in 1996, and in 2000, they married. A few years later, Deborah Levy gave birth to a boy, now a third grader. He was followed by another boy, now a kindergartner. The Levys considered their family complete and were surprised in November 2006 to learn that Deborah Levy was pregnant again.

Because she was 34, she and her husband were concerned about the possibility of genetic disorders. Experts testified that about 1 in 250 women that age give birth to a child with Down syndrome. A first-trimester screening showed Deborah Levy's chances were estimated to be higher than average, at about 1 in 130.

So when Deborah Levy was 13 weeks pregnant, she underwent the CVS.

Ariel Levy told jurors he remembers feeling happy when he and his wife were told the results were normal.

"We were told that we had nothing to worry about," he said.

Deborah Levy testified that after their daughter was born at Good Samaritan Medical Center in Northwest Portland, a doctor told her not to worry about the way the child looked because the results of the CVS were normal. One week after her daughter's birth, she said she arrived at the pediatrician's office eager to "show off my daughter." That's when she learned the blood tests showed her daughter had Down syndrome.

"It was devastating," Deborah Levy recalled.

The Levys said their sons are healthy, strong and bright. The oldest is a competitive chess player and has placed in the 99th percentile on standardized tests.

Their experience with their daughter has been much different. Her parents say they worry about future medical problems, her ability to interact with others and whether she will receive the extra therapy and attention she will need in school. Experts have told the Levys that she likely won't be able to live on her own, or support herself. The Levys worry about who will care for their daughter once they are gone.

Kalanit speaks in two word sentences, and few other than her mother and father understand. Like many of those with Down syndrome, she doesn't like brushing her teeth.

"I literally have to pin her down with my legs while she's screaming," Deborah Levy said.

Despite all of this, the Levys say they have the same expectations for their daughter as they do for their sons: They want to help her reach her full potential. Deborah Levy said Karen Gaffney has been a role model. Gaffney -- a Portland area woman who has Down syndrome -- graduated from high school with a regular diploma, earned a Portland Community College degree and travels the nation speaking about overcoming limitations.

One expert estimated that a child with Kalanit's condition is likely to live into her mid-50s. The additional lifetime costs of caring for her --above and beyond that of a child without Down syndrome -- is nearly $3 million.

The jury continues deliberating Friday.

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