False Positive T21 NIPT
**My NIPT/T21 experience — I wish I could go back and hug my 9-week-pregnant self ❤**️
I’m writing this because I know how terrifying those few weeks can feel when you’re suddenly thrown into a world of numbers, percentages, genetic counselors, and words you never expected to hear during pregnancy.
I had my NIPT done at 9 weeks + 5 days. My fetal fraction was 4%, and a few days later my Panorama result came back high risk for T21. My report listed the risk after screening as 20/100 (20%).
I honestly cannot describe the fear that followed.
One minute I was happily pregnant, imagining my baby and planning the future. The next, I was Googling everything I could about NIPT, PPV, false positives, fetal fraction and diagnostic testing. I kept looking at the same report over and over, trying to understand what it actually meant.
I was told a different PPV estimate of 64% during genetic counseling, which added even more confusion. I remember feeling like I was drowning in percentages
I eventually chose amniocentesis and skipped CVS because I needed a diagnostic answer rather than another probability. And I was willing to wait.
And yesterday came my FISH results
Normal. No evidence of numerical abnormalities for chromosomes 13, 18, 21
The full karyotype is still being completed, but seeing that NORMAL result after weeks of fear was an emotional moment I will never forget.
Looking back, I wish more than anything that I could go back to my 9-week-pregnant self and hug myself
Because somewhere underneath all the fear, I already had this incredibly strong mother’s gut feeling that everything was absolutely fine. I held onto that feeling even when the numbers made me question everything.
So to every parent going through this right now: trust your gut, stay positive, and take it one day at a time. ❤️ A screening result is not the same thing as a diagnosis, even though it can feel like your whole world has changed overnight.
The waiting is brutal. The uncertainty is brutal. But there can still be hope.
I’m sharing this because when I was in those first terrifying days, I desperately needed to read stories from people who had been through it.
I’m sharing my story to send strength, hope, and positivity to every parent going through this right now. Wishing each and every one of you a beautiful outcome and hoping that everything turns out absolutely okay. 🙏🏻💕