Oregon parents sue over costs of raising their baby with Down syndrome, who they say they would have aborted had they known

From The Oregonian:

In the months before their daughter was born in 2007, Deborah and Ariel Levy worried the baby might have Down syndrome.

They say a doctor at the Legacy Center for Maternal-Fetal Medicine assured them that a sample of tissue taken from the placenta early in the pregnancy ruled out the developmental disability, despite the results of later testing that showed the fetus might have it.

But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they're suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as "heartless."

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said fewer than 10 such suits -- for disabilities ranging from spina bifida to severe retardation -- are filed in the U.S. each year.

"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.

Miller said his clients are "committed to the best possible life for their daughter." He said one of their role models is Karen Gaffney, a 31-year-old Portland woman with Down syndrome who earned a regular high-school diploma and an associate of science degree from Portland Community College and travels the nation as a renowned speaker.

"They feel very strongly that what happened to them was wrong," Miller said. "They were given incorrect information, and their lives have changed because of it."

The 1973 decision Roe v. Wade by the U.S. Supreme Court opened the door for such suits because parents generally must claim that they would have aborted the fetus.

The "wrongful birth" and "wrongful life" lawsuits are controversial. High courts in roughly two-thirds of states have allowed the suits. Some states -- including Michigan, Georgia and Utah -- have banned them.

One director of a national Catholic organization praised the prohibition of such suits, saying "it is never wrongful for a baby to be born."

But others say the bans strip families of the right to seek compensation for medical malpractice. Susan Wolf, a professor of law and medicine at the University of Minnesota, said suing for a botched prenatal test is no different than suing for a botched knee surgery. Answering the essential question, if a child would have been better off never being born, is a tough one, she said.

"So many courts have resisted compensating the child directly," Wolf said. "But most of them have found a way to compensate the parents."

In 1994, the Oregon Supreme Court ruled that two Eugene parents could sue for the costs of raising their child and for providing a college education after they claimed that a doctor failed to perform a requested tubal ligation during the C-section delivery of the mother's second child. Jonni Zehr found out she was pregnant with a third child seven months later.

The number of wrongful birth lawsuits is expected to grow as an increasing number of women give birth over age 35, when the probability of chromosomal birth abnormalities such as Down syndrome rises. Rapidly advancing technology, especially in the past decade, means prenatal tests can now identify hundreds of conditions although the vast majority of these tests aren't given to women who aren't deemed a specific risk.

In some cases, testing allows doctors to treat conditions before birth. In other cases, test results give parents time to prepare for the challenges of raising a special-needs child. It also provides information that prompts some parents to terminate the pregnancies.

The decision to get an abortion, experts say, is less difficult for many parents when the disability is a condition such as Tay-Sachs disease, which in its most common form kills most children before age 4. Ethicists wonder about the morality of such a decision when the condition is deafness, blindness, a cleft lip, obesity or a propensity to develop breast cancer or have a heart attack later in life -- all of which can be identified in the womb,

One decade-long study referenced in a policy brief by the Washington State Department of Health found that 28 percent of women who knew they'd give birth to a baby with a cleft lip or mouth deformity chose to end their pregnancies.

Increasing numbers of pregnancies are being screened for Down syndrome. Doctors formerly reserved the test largely for women age 35 and older, but in 2007, the American College of Obstetricians and Gynecologists recommended that all pregnant women be offered the screenings. Several studies show 90 percent or more of women who discover they'll give birth to a baby with Down syndrome choose to have an abortion.

Deborah Levy, who was 34 when she was pregnant with her third child, was given a chorionic villus sampling (CVS) during her first trimester, and the results came back negative for Down syndrome.

The couple's suit claims that they were repeatedly told that the test had "definitively ruled out" Down syndrome. The test is reported to be more than 99 percent accurate. The suit contends that the clinic bungled the test.

A Legacy spokeswoman declined to comment because of the litigation.

In addition to seeking money for the child's future care, the couple ask compensation for the depression and emotional distress Deborah Levy has suffered and for her inability to go back to work as a dental hygienist. Ariel Levy, a civil engineer, also seeks compensation for the effect his daughter has had on his relationship with his wife.

The Northwest Down Syndrome Association in Portland encourages doctors to send parents expecting a baby with Down syndrome to her organization, said Executive Director Angela Jarvis-Holland, because it is equipped to answer questions about what life will be like.

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

Prenatal tests can't discern the severity of Down syndrome, and it varies widely by individual. Jarvis-Holland said involved parents with the right resources can greatly improve their child's development.

She said the ability to test for a growing array of conditions means many more women will be faced with the question of whether they want to be tested for everything from autism to an alcoholism gene (tests are in the works), and what they'll do if the results come back positive.

"Down syndrome is really the canary in the coal mine," Jarvis-Holland said. "It will be everybody's question before we know it."

Jarvis-Holland, who has a 10-year-old son with Down syndrome, worries about what she calls the "tyranny of perfection" if parents one day will be able to test for virtually every conceivable disadvantage facing their fetus.

"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."