Celebrating the Upside.
In March, parents of a four-year-old Oregon girl who has Down syndrome were awarded nearly $3 million in a lawsuit against the hospital where prenatal testing showed the baby did not have Down syndrome. After the infant was diagnosed at birth with Down syndrome, the parents sued the hospital, claiming they would have terminated the pregnancy if they had known.
This is not just a story of medical misdiagnosis, says Dr. Julia Kinder, a Missouri physician and mom to seven-year-old Ella, who has Down syndrome. "Thousands of parents each year face the decision to keep or terminate their pregnancy based on a prenatal diagnosis of Down syndrome, says Kinder. "And parents are often making that decision based on widespread misconceptions and misinformation."
"Down syndrome is not a disease, like cancer, and should no longer be approached as such. Screening for Down syndrome should be done for the purpose of allowing time for parents and physicians to prepare for the birth of a baby who may need extra care," she says. "Unfortunately at this time, screening for Down syndrome is seen as a way to 'prevent' Down syndrome by giving parents the option of termination." And because of the outdated and negative image of Down syndrome, 90% of women who find out their baby may have Down syndrome--this includes women who chose less-invasive tests that do not determine for certain a diagnosis but only a probability--will choose to terminate the pregnancy.
"Down syndrome doesn't need to be eradicated. I can't imagine life without my daughter, Ella," says Kinder. "It makes me sad that one of the biggest fears of pregnant women is Down syndrome, and that new parents of a baby with Down syndrome go through a period of mourning. It makes me sad because it isn't necessary; those negative feelings are based on inaccurate information about Down syndrome."