I have written about the alleged accuracy of prenatal blood testing before as both a nurse and a mother in my blog “A Dark Side of Prenatal Testing” and “Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion”.
Now, ProPublica, a self-described nonprofit investigative newsroom, just published an article titled “They Trusted Their Prenatal Test. They Didn’t Know the Industry Is an Unregulated “Wild West.”
The authors tell the story of a mother who had an in vitro diagnostic test (IDT) that came back negative, meaning her baby did not have the serious conditions that were tested for.
However, when the mom delivered her daughter, the baby had serious problems and only lived 28 hours.
The autopsy showed that the baby had an extra 13th chromosome, a condition that was part of the testing. The chances that the baby would have not have this or two other serious conditions was “greater than 99%.”
The test was a simple blood draw designed to check for an array of genetic anomalies but the mother, a science researcher, read academic articles showing a higher risk of inaccurate results than she realized.
The mom found other women reporting problems with the tests also so she tried contacting the company that made the test, hoping she would help other families.
She was unsuccessful.
She found out that if she had taken other common commercial tests like some for Covid-19 or pregnancy, the company would have had to inform the US Food and Drug Administration about “reports of so-called adverse events.”
The mom found out that the test she took fell into a regulatory void:
“No federal agency checks to make sure these prenatal screenings work the way they claim before they’re sold to health care providers. The FDA doesn’t ensure that marketing claims are backed up by evidence before screenings reach patients. And companies aren’t required to publicly report instances of when the tests get it wrong — sometimes catastrophically.
The broader lab testing industry and its lobbyists have successfully fought for years to keep it this way, cowing regulators into staying on the sidelines.”
The stakes are high for families with the article stating:
“Upwards of half of all pregnant people (sic) now receive one of these prenatal screenings.”
And that the companies stress that “ultimately, it’s the responsibility of health care providers, who order the tests, to inform patients about the limits of screenings.”
When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome.
Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS.
I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy.
After that, I was remarkably worry-free during my last pregnancy and delivered a healthy girl.
But maternity care has changed a lot since 1985, especially since the American College of Obstetricians and Gynecologists (ACOG) now states that Abortion is Healthcare Abortion is Healthcare | ACOG
But despite the possible inaccuracies of prenatal test, there is help if a baby is diagnosed with an unexpected condition like Down Syndrome or Trisomy 13.
Thankfully, there are even programs like Perinatal Hospice & Palliative Care: Continuing Your Pregnancy that can help in the event of a prenatal diagnosis that indicates a baby may die before or after birth.
Where there is love, there is always hope!