Opting Out: The Danger of a False Positive

You are in a state of pregnancy bliss expecting a beautiful baby. You make an appointment with your provider to confirm your joyful news (as if the morning sickness and general desire to disconnect from humanity into a state of baby growing hibernation are not confirmation enough).
At your first appointment, you are bombarded with the obstetrician’s reading material of choice, advertisements for supplements about which you know nothing, and a schedule of screenings that you and your baby will soon “elect” to undergo (or not). You are instantaneously pulled from your state of delight and enter an alternate reality of decision-making that leaves you lingering between information overload and sheer panic. At least that’s what happened to me.
As I progress through my third pregnancy I find myself becoming more critical of the information that I am often times not provided. For example, in November after a routine 10-week confirmatory appointment with my care provider, I voluntarily went down to the lab to have my blood drawn for a maternal prenatal panel. Did someone explain the purpose, methodology and accuracy rate of my prenatal panel to me? You guessed it, no; it must have casually slipped my provider’s mind. I was so wrapped up in the excitement from hearing the tiny gallops echo over the fetal doppler monitor that I ditched my critical nature and consented to testing without information.
Three weeks passed and I didn’t think twice about that 5 vial draw. I was busy dreaming about the perfectly developing baby that I was carrying—my rainbow baby. Two days before Thanksgiving, my state of ignorant bliss was rudely interrupted by a 7:00 PM voicemail from my provider, “Just letting you know I got the results of your panel, you’re positive for Hep B. I’m assuming you knew this based upon your recent pregnancy; this will change our approach to managing the upcoming delivery,” or something to that effect. Refer to statement about sheer panic above, excuse me… WHAT!
After calling the office’s emergency line and scheduling a retest for the next morning, I spent the next week between a state of fear-induced denial over the possibility of that diagnosis and over immersion into articles related to false positive Hep B screening results and birth implications. It is sufficient to say that my stress levels skyrocketed and my holiday cheer was derailed. When I asked about the rates of false positives on these tests I was given a casual, “sometimes it happens,” response. The following Tuesday, I called the office for the third time to obtain the results of my rescreen and received the news that it was a false positive. “Thank God,” I exhaled and hung up the phone.
Whether the first result was inaccurate or whether I experienced divine intervention and was healed I will never know for sure, but it certainly provoked my curiosity about the accuracy rate of popular screening methods and the implications that the method of delivery of their results has on expectant mothers. I lost 168 hours of bonding time with my baby worrying over whether I would be okay and about the implications of my diagnosis. I was raw with emotion during this period of waiting, having received very little support or information from my provider. Still, I carried on with a commitment as I do when operating in survival mode to trust that even in this situation there is a purpose.
When offering prenatal testing, my providers have lacked holistic concern for me as an expectant mother.
When I was experiencing my first pregnancy, my obstetrician introduced prenatal genetic screening for chromosomal disorders during my first appointment. This was presented before getting to know me or asking about my belief structure which would shape my perspective on genetic testing. As she casually suggested that I will undergo genetic testing to make an informed decision about continuing my pregnancy I was mortified—this was my first prenatal appointment, for the love!
My doctor effectively said, “Hi, nice to meet you,” and then proceeded into defining the value of my child by chromosomes and suggesting termination without taking a breath. I declined genetic screening. My husband and I left and I stated, “chromosomes do not determine the potential of my baby, we’re getting a new OB”—for us the choice to opt out was simple. We were in agreement that chromosomal “abnormalities” are not a problem because we have committed to celebrate the development and differences of our children from conception—that commitment extends the length of their existence with us be that 10 weeks in utero or 100 years on Earth.
As I processed my own screening misdiagnosis, I wondered about the mothers who had opted for genetic screening and received a falsely elevated risk assessment. What was the impact of that result on her ability to bond with her baby? Did her care provider tell her that there is no such thing as a “positive result” on a prenatal genetic screen without further invasive testing? Would she opt into invasive testing even though she is otherwise opposed out of fear?
Unfortunately, as you research the possibility of a falsely elevated risk evaluation, you will find that it is not uncommon. Narrowing down the level of occurrence of inaccurate risk assessment can be difficult, but some research suggests that it is as high as 5% in a first trimester screen. This means that of 1 in 20 women who elected a first trimester genetic screen one will receive a “false positive.” Think of the women that you know that have been pregnant; it is likely that you know someone that has experienced this. Are they reassured during their period of waiting that they have the strength to handle a complicated diagnosis? Let me tell you mothers, you are strong enough. A screen does not define you or your baby.

Elise Verwers

Elise Verwers

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