AT HER APPOINTMENT, SHE WAS HANDED FIGURES THAT REPRESENTED CHANCES OF HER CHILD’S DEATH BEFORE HER THIRD YEAR OF LIFE AND A LIST OF CONDITIONS HER BABY WOULD LIKELY HAVE IF SHE WERE TO SURVIVE. WHEN SHE BEGAN CRYING, SIE WHITTEN SAID THE GENETIC COUNSELOR RESPONDED WITH: “MRS. SIE WHITTEN, PLEASE DON’T CRY, HERE’S A TISSUE 80-90 PERCENT OF PEOPLE TERMINATE; YOU CAN, TOO.”
Michelle Sie Whitten, co-founder of the Global Down Syndrome Foundation, says that it’s important that the difference between a screening test, which only gives risk factors for Down syndrome, and diagnostic test, which definitively diagnoses Down syndrome, are made clear to patients. Prenatal blood tests are screening tests for Down syndrome, but diagnostic tests for Down syndrome still require an invasive procedure, such as an amniocentesis. She describes her organization as believing in the importance of expectant parents having access to the best prenatal information possible. This is often touchy ground for discussions of Down syndrome, because, of course, prenatal testing is often assumed to go hand in hand with consideration of abortion — a topic that is always difficult, no matter where one stands on the issue.
Sie Whitten explains that, “For the record, I am pro-choice. Global Down Syndrome Foundation is not pro-choice, is not pro-life. Global Down Syndrome Foundation is pro-information.” She tells Romper:
Sie Whitten says she believes that early diagnosis can be helpful for families to have as much time as possible to understand their child’s diagnosis.
And she speaks of this from a place of personal experience. When she was pregnant with her first child, Sie Whitten received the news that her daughter had Down syndrome. She said she was shaken, particularly by how the news was delivered. At her appointment, she was handed figures that represented chances of her child’s death before her third year of life and a list of conditions her baby would likely have if she were to survive. When she began crying, Sie Whitten said the genetic counselor responded with: “Mrs. Sie Whitten, please don’t cry, here’s a tissue 80-90 percent of people terminate; you can, too.” Instead, she and her husband learned more about Down syndrome.