Dan Fraker and his wife, Colleen, want to make this clear: They adore their little girl. Dan, 29, delights as Leilani, a sparkly 2-year-old, allows her mouth to fill with macaroni, then playfully refuses to swallow until Dad pleads. She nuzzles beside Colleen, 29, in their Riverside, Calif., home, emphatically explaining, as her eyes droop, that she is not tired. “She’s like a little angel,” says Colleen. “She’s never given me any trouble.”
But after Leilani was born on Aug. 29, 2003, with her spine exposed—a symptom of the severest form of spina bifida—her shocked parents sued Colleen’s obstetrician, Dr. Frederick Dieterich. Under California state law, women expecting a baby must be informed by their doctors of prenatal tests that can help detect spina bifida and other conditions. Armed with the results, parents can then prepare for the birth of a child with a disability—or make the agonizing choice to terminate the pregnancy.
What would Colleen and Dan have done in that case? They decline to reply directly. “I don’t know if I can answer that just because of the fact she’s here now,” says Colleen, as Leilani plays nearby. Yet they worry about what life holds for their daughter—who is fully paralyzed below her knees, partially paralyzed below the waist, has recurring urinary tract infections and uses a wheelchair or walker to get around—and they resent not knowing about her condition sooner. “The main thing is, we were never given a choice,” says Colleen.
Although reliable statistics on the number of pregnancies terminated because of prenatal screening results are impossible to come by, a 2004 survey, conducted by the Guttmacher Institute, of 1,200 women who had abortions revealed that about 3 percent of those terminations were in response to health problems concerning the fetus. The Frakers are among thousands of parents who have filed so-called wrongful birth suits against their doctors, charging they should have been given that option. Says Larry Eisenberg, the couple’s attorney: “The whole purpose behind prenatal testing is to allow the pregnant woman and her partner to make an informed decision about what to do.”
But that notion—that women can end a pregnancy based on health concerns—is a subject of fierce controversy. “The message is that the life of an infant or toddler with a disability is a mistake,” says Andrew Imparato, CEO of the American Association of People with Disabilities. “To me that’s another way of saying that disability is worse than death.”
Under the terms of a settlement reached with their doctor last year, Dan and Colleen are forbidden to discuss full details of their case. They claim they were never informed of a simple blood test called AFP screening, usually administered in weeks 15-20 of pregnancy. Moments after Leilani was born, Dan says he noticed a red mass the size of a tennis ball on her back—actually a section of her spine, left exposed by spina bifida. Doctors whisked the baby to another hospital, where she had surgery to close her back. A week later a second surgery prevented spinal fluid from collecting in her brain. Her parents, meanwhile, had questions. “I thought, ‘God, I had so many ultrasounds, how could they not see the spine?'” says Colleen. Health workers told them the condition could have been detected; doctors in California are required by law to tell patients about AFP tests.
The couple and their son Brendon, a fourth grader, have gradually adapted to the special needs of Leilani, a playful child who “is almost always happy,” says her mom. Dan supports the family with maintenance work for an oil company, and Colleen has quit her medical receptionist job to care for their daughter full-time. Colleen confesses she used to think about what might have been: “I’d see girls walking home from basketball practice; it was heart-wrenching to watch,” she says. But now the Frakers are content to watch Leilani grow. “She’s such a joy,” says Colleen. “She’s great.”