Ethicists and politicians, lobbyists and religious leaders, doctors and lawyers may not agree with a family’s decision to pursue a wrongful birth claim. For one Portland couple, though, the difficult decision proved to be the right one: A jury awarded them $2.9 million to care for their child who was born with Down syndrome.
The story began in 2006, when the couple learned they were pregnant. The wife’s age was a concern, though — she was 34 — so they agreed to have their doctor run some genetic tests. The chorionic villus sampling test requires the physician to take a sample of cells from the placenta. According to medical websites, CVS is highly accurate (98 percent) in diagnosing chromosomal defects that cause Down syndrome, cystic fibrosis and other genetic diseases.
The parents-to-be were relieved to hear that the test results showed no chromosomal abnormalities. When ultrasounds later showed abnormalities in the baby that could be related to Down syndrome, the care team reassured the couple that the baby did not have a genetic abnormality. According to court records, no one at the health system recommended any other tests, like an amniocentesis, to confirm the CVS results.
The care team told the family that the baby did have Down syndrome just a few days after she was born. With that news the parents realized that caring for their daughter would be more complicated and more expensive than they had anticipated.
As much as they loved — and still love – their daughter, the couple had to ask themselves a heartwrenching question: If the test results had been accurate, would they have continued with the pregnancy?
The answer was no.
Legal and medical professionals say that wrongful birth claims are rare because advances in technology and testing, like the chorionic villus sampling test, have made detection of birth defects or abnormalities more accurate. Research has shown that almost 90 percent of women who learn that their baby has Down syndrome choose to terminate the pregnancy. The couple in this case would have done the same, if they had had the choice — if they had had the correct information.
They filed a medical malpractice claim against the health system and the lab that processed the CVS test. From the beginning, their attorney said the couple was concerned about providing their daughter with all the care she would need over her lifetime.
At trial, experts explained that the little girl, now 4, is unlikely to earn a living or live on her own; she will need speech and physical therapy for many years; and she is at risk for a multitude of health problems associated with Down syndrome for the rest of her life.
Wrongful birth cases are also rare because of the controversy that comes with them. Admitting in court that you have terminated a pregnancy because of a chromosomal abnormality is neither easy nor popular. In fact, this family has received death threats, according to their attorney.
Health system representatives did not respond to reporters’ requests for comment. No information was available about a possible appeal.
Source: The Oregonian, “Jury awards nearly $3 million to Portland-area couple in ‘wrongful birth’ lawsuit against Legacy Health,” Aimee Green, March 9, 2012