It was after 5pm on a Monday evening and I was rushing to prepare for a virtual school board meeting when my phone rang. Thinking it was odd to get a call from my OBGYN’s office after hours, I decided to answer.
“Do you have a minute?”
I could hear the concern in the nurse’s voice, so I knew this probably wasn’t going to be a fun conversation. Days earlier, I’d had a slew of early pregnancy lab work done, including the NIPT. I immediately started preparing myself for what she would say. Was my blood sugar way off? Were my hormone levels not right? Is something wrong with the baby?
Nothing could prepare me for what came next.
“Your HIV test came back positive.”
I instantly felt the blood drain from my head. I must be hearing things. She must be calling the wrong person. I didn’t even know that my lab work included an HIV test…how could it be positive?
The rest of that conversation is a blur. I remember the nurse trying to be reassuring. “…false positives happen…especially in pregnant women…I’ve seen this two other times…”
As I tried to listen to the nurse, I felt panic wash over me. I am a child of the 80s. I watched the stories of Ryan White and Magic Johnson unfold as a young girl. The outcomes have improved over the years, but HIV is still super scary to me and the sweet nurse’s attempts to calm me down fell flat.
If this wasn’t a mistake, this would be a life-altering diagnosis for me…and for my entire family.
With instructions to go the next day for additional RNA nucleic acid testing, I hung up the phone and burst into tears. When my husband asked me what was wrong, I couldn’t even say the words…because that might make it real. After taking a few moments to gather myself, I was finally able to explain what the nurse said. And, of course, he did and said all the right things. “…I’m sure it’s a mistake…we’ll get through this together…don’t worry, sweetie…”
False Positive HIV Tests in Pregnant Women
Later that evening, my husband and I began scouring the Internet for information and, thankfully, it was reassuring. False positive HIV tests DO happen, particularly for pregnant women who have been pregnant before.
So, if you are a pregnant woman who is reading this because you received a positive HIV test and you’re desperate for answers, here is some information that you might find reassuring.
First, it’s worth noting that routine HIV screening consists of two tests. The first test is one that specifically tests for HIV1/HIV2 antibodies. My results for that test came back negative.
The second test that came back “positive” is called a fourth generation HIV test. This test is looking for both HIV antibodies AND p24 antigens, which appear even before the immune system starts producing HIV antibodies. The upside? This test helps people identify the virus in the window of time between transmission and detectable HIV antibody development. The downside? It is falsely positive about 4 out of 1,000 times (1). And since pregnant women are a “low-risk” population that is also frequently tested (twice during your pregnancy in Texas), there’s an increased chance that a false positive result will happen to a pregnant woman. Furthermore, women who’ve been pregnant before produce an antibody that is believed to increase the likelihood of a false positive result (2).
As I digested the research I found, my anxiety began to subside. Multiple studies said the same thing: a negative HIV antibody test and a “reactive” or “positive” fourth generation test in a low-risk person have a high likelihood of being a false positive result.
I was tested for HIV twice just two years earlier when I was pregnant with my son…both results were negative. My husband and I are in a committed, monogamous, happy relationship, so I truly couldn’t see how it would even be possible that either of us could contract anything. And, after scouring the Internet, my research satisfied me that chances were high that this was a false positive result.
Waiting, Relief…and Joy
So, I decided not to panic…I decided to wait. Instead of the 2-3 days suggested, my follow up RNA nucleic acid test results took a full week. And it was a long, emotionally taxing week.
I tried to carry on like everything was normal while I waited. I couldn’t stop my mind from thinking through the “what ifs”, though. Even in my certainty, I had to consider the possibility that these results weren’t false. My greater concern was this: what about the women with false positive HIV test results who aren’t so certain that their results are false? This entire situation caused a tremendous amount of emotional distress, especially in the early stages of pregnancy, but I can’t even imagine what that stress would be like for those who aren’t in completely stable and trusting situations. It made me wish that I had been better informed about the test and the possibility of a false positive (no matter how minuscule the chance) before I was in the throes of a panic attack.
Luckily, I managed to keep my stress level low as I waited. One week later, I received the news I had hoped for and anticipated – my first HIV test was falsely positive. Obviously, that confirmation was a tremendous relief.
Without a doubt, this entire situation has given me a renewed appreciation for my stable, loving marriage, and my amazing husband. Above all, though, this experience made me realize that stories like mine, however uncomfortable or traumatic, need to be shared for other moms in this same boat.
While this is an inexact calculation because it doesn’t account for multiple births, miscarriages, or stillbirths, there are approximately 3.8 million births per year in the United States. If each pregnant mother was only tested once (and many are tested more than once), there would be approximately 15,200 false positive fourth generation HIV tests per year in the United States. That’s a pretty big boat! And, if you’re reading this because you’re in that boat, I hope that my story and this information help bring you some perspective and peace of mind.
While it was slightly overshadowed by all of the HIV testing and results, I also received the lab results of my NIPT test – we are happily expecting another baby boy.
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