“They scared me to death for no reason”: an interview with Emily Davis on pressure after prenatal testing
I interviewed Emily Davis, a friend and long-time pro-life activist, about her experiences with first trimester genetic testing.
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Key Takeaways
- Medical professionals sometimes present uncertain test results without fully explaining the process, limitations, or false positive rates.
- Standard-setting medical bodies, such as the American Academy of Pediatrics, are not infallible. Their guidance changes over time. Both medical professionals and patients should treat them as one input, not the final say.
- Pregnant patients harmed by substandard medical care usually lack the time, energy, or emotional capacity to push back through formal channels. As a result, harmful practices continue without much accountability.
Summary
“They were acting like this was a sure thing.”
Emily described how routine prenatal genetic screening turned her wanted pregnancy into weeks of stress and fear because medical professionals insufficiently communicated the testing process and inaccurately explained the certainty of the results.
After a blood test showed low amounts of fetal DNA, providers told Emily there was a 95% chance her baby had trisomy 13 or trisomy 18 (significant abnormalities). They pushed her to hurry and schedule an amniocentesis to confirm. But they didn’t explain that the test doesn’t actually analyze specific genes or chromosomes, and they didn’t discuss the rates of false positives.
Amniocentesis increases the risk of miscarriage. Instead of rushing to get an invasive procedure, Emily wanted to repeat the genetic screening. But her doctors “made it seem like it would be futile,” and her insurance said they wouldn’t cover a second test.
Emily insisted on a repeat screening anyway, and it came back with completely different results. Across the board, her baby girl was at low risk for trisomy. She later gave birth to a healthy baby girl with no genetic abnormalities.
“Recently, the American Academy of Pediatrics updated their guidance.”
Emily’s story illustrates why it’s a mistake (for patients and providers alike) to treat medical institutions as foolproof.
“[The American Academy of Pediatrics] finally said – after many years of parents calling for it – that you need to have some more nuance here.” (Monica)
Emily and I talked about the older guidance from the American Academy of Pediatrics (AAP) regarding trisomy 13 and 18, which AAP long described as “incompatible with life.” After years of advocacy by parents (and physicians allied with them), the American Academy of Pediatrics more recently updated their guidance. They now say that babies with trisomy 13 or 18 are not uniformly incompatible with life, and further assert it’d be unethical to withhold available treatments to these babies based only on a trisomy diagnosis.
[Read more: AAP updates guidelines for prenatal care of babies with Trisomy 13 or 18]
Medical professionals have specific education and experience, and people should go to them for expert advice. But we also shouldn’t treat that advice as infallible. They’re always learning, and as research and technology continue to improve, best practices and conventional wisdom change.
“When something bad happens, once you’re out of it, you are just so ready to put it behind you and move on.”
I asked Emily whether she ever filed a complaint or gave formal feedback about what happened. She said she never did. Like many women after a frightening pregnancy experience, she mostly just wanted to move on and enjoy the rest of her pregnancy, not drag on the ordeal through paperwork or disputes. She did warn others through word of mouth about the risks and drawbacks of some prenatal testing. But, she explained, she felt too emotionally exhausted to fight with medical institutions.
“You put me through anguish for weeks … I felt like I was trying to amass all of these battle plans. It was a lot of mental anguish, not just for me, but for my husband, for the grandparents, everybody.” (Emily)
I noted that this dynamic is extremely common: patients harmed by poor care often lack the time or emotional bandwidth to push back, which means harmful practices can continue for years without functional feedback loops. In many cases, I expect the offending medical professionals would be eager to accommodate improvements but aren’t even aware of how their demeanor or decisions are impacting patients.
[Read more: Prenatal Testing: Do Parents Have Informed Consent?]
Interview Chapters
1:09 — Quick Backstory
2:03 — Pushing Genetic Testing
3:15 — Frightening Test Results
6:05 — “95% Chance” Explained
9:11 — Refusing Amniocentesis
13:40 — Guidance Changes from American Academy of Pediatrics
20:15 — Same Test, Different Results
22:58 — Why Formal Complaints Rarely Happen
27:15 — What Was Actually Tested
32:53 — When OBGYNs offer “options”
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