If Only We’d Known, Parents Say

Like most parents, Leilani Duff’s mother and father say they want the best for their little girl, who celebrated her first birthday last week. But had they known what risks she faced in life, the child might never have been born.

The Yorba Linda parents are suing their obstetrician, Dr. William Dieterich, for unspecified damages because they say he failed to tell them about a state-mandated screening to test for diseases such as spina bifida -- which has left Leilani paralyzed from the knees down.

The couple say they were denied the opportunity to decide whether to abort the pregnancy, something they would have weighed had they known the child would be born with a disabling defect that can result in paralysis, profound learning disabilities and fluid on the brain.

“The whole rationale of the statute is to provide pregnant women with the information so they can make an informed decision about whether or not they want to keep the baby,” said Larry Eisenberg, the lawyer for Dan Fraker and Colleen Duff. “In this case, the parents would have had to think long and hard about it, but my understanding is they would have opted for an abortion.”

The couple declined to be interviewed, and Dieterich, 54, of Yorba Linda, did not return phone calls to his home and office.

So-called “wrongful birth” and “wrongful life” lawsuits have become increasingly common, experts say, because of advances in genetic testing and climbing healthcare costs that have increased the financial consequences of disabilities.

But as the numbers mount, some experts say the ethical issues that should accompany the debate are lost. Such lawsuits create the expectation that every child has a right to be born perfect and that anything less is cause for legal action, said the legislative counsel for the Ohio Right to Life Society.

“You have a situation where the only way to avoid injury to a child is to abort him or her,” said attorney Mark Lally. “It comes down to saying her life isn’t worth living. That’s not someplace we want to go with our laws.”

For Leilani’s parents, though, the lawsuit is not about resentment of an imperfect child or the doctor who delivered her, they say. California law required Dieterich to tell them about the alpha fetoprotein blood test that probably would have detected spina bifida in their unborn daughter, and they say his negligence has saddled them with costs they would not have chosen to pay.

When Colleen Duff started seeing Dieterich during her pregnancy, she says he did not detail what the AFP screening was for or follow the state-mandated process requiring her written authorization if she opted not to take the test, typically performed between the 15th and 18th weeks of pregnancy.

“The doctor said, ‘Oh, you’re young, you’re 27, you have another child,’ ” the couple’s lawyer said. “He told them, ‘You don’t need to do this test.’ It was a brief conversation and nothing more was done.”

When Leilani was born Aug. 29, 2003, her parents immediately knew something was wrong. Part of the baby’s lower spinal cord was exposed, and she was transferred within hours from St. Jude Medical Center in Fullerton to Children’s Hospital of Orange County for surgery.

Although her parents still don’t know how much Leilani’s condition will affect her mental capacity, they told their lawyer it is obvious her life will be impaired. The couple has had to hire a nurse to supervise their daughter almost constantly, Fraker has had to take time off from his job as an oil field maintenance mechanic, and the baby requires increasingly specialized medical equipment.

“The demands are enormous,” Eisenberg said.

The California Supreme Court recognized the right to sue for wrongful life in 1982. Since then, dozens of couples have filed similar lawsuits, typically involving neglected or botched testing, failed vasectomies or misread sonograms.

In 1986, a young Huntington Beach couple sued a physician who they said failed to perform a procedure that would have detected Down syndrome in their unborn child. Three years ago, the mother of Nathaniel Galvez sued her Los Angeles doctor, contending her son was born with spinal defects that would have been detected had the physician performed an AFP blood test. In the first case, jurors determined the physician was not at fault. The second case was settled out of court.

Although such lawsuits may seem to devalue the lives of people with disabilities and imperfections, said USC law professor Michael Shapiro, the legal issue is whether expectant mothers received poor physician care.

“The courts dwell on the fact that they don’t want doctors and testing laboratories making gross errors,” Shapiro said. “When a doctor doesn’t fulfill his state-mandated responsibility to inform patients about these tests in the first place, it deprives parents of their opportunity to choose.”

The rise in wrongful-life suits and the threat of legal responsibility for a child’s defects puts obstetricians in the uncomfortable position of recommending, if not insisting on, abortion when there is the slightest doubt, said one physician.

“On one side you have a liability mess that puts you on the hook for the rest of the child’s life,” said Dr. T. Murphy Goodwin, chief of maternal-fetal medicine at USC’s Keck School of Medicine.

“The other side, you have carte blanche to avoid the potential for these kinds of problems by shading the discussion to advocate abortion. There’s almost no adverse reaction if a doctor tells someone to terminate a pregnancy based on faulty information.”

The problem is that too many couples have an expectation that genetic testing exists so they can avoid unwanted outcomes, Goodwin said, whether that be life-threatening diseases, cosmetic defects or even having a female child.

“Rarely does the decision to have an abortion come down to life or death,” said Goodwin, a member of the American Assn. of Pro-Life Obstetricians and Gynecologists.