Waiting to Exhale: A Conversation About Fetal Testing

Jamie Elizabeth maternity

{Image via Miss Jamie Elizabeth}

I probably need to have my head examined for exploring a topic that will inevitably peeve half the female Facebook population. Nevertheless, I recently asked a few friends and readers if they underwent genetic fetal testing during their pregnancies. Here are a few of their responses:

Ashleigh said:
“Since I struggle with worry, I didn’t want to spend a majority of the pregnancy concerned– especially since the tests aren’t always right.”

Hollie said:
“I didn’t see a reason to get a “heads up” of any test results early. I put my trust in God, and lived by faith, and ‘what will be will be’.”

Abbie said:
“There is no instance when I would consider aborting a child, so to spend the money, let alone my emotional investment, on this testing would seem a mere and unnecessary stroking of my curiosity.”

Alexis said:
My job was to create a safe and healthy environment for my baby to grow and develop. I didn’t see the point in having genetic testing done. The outcome would remain the same.”

Kristy said:
Many people base their decision on whether or not they continue a pregnancy on early genetic testing. For me, even a detrimental prognosis would not have altered my decision… I am pro-life, and I would carry a baby as long as possible, regardless of what any genetic test says.”

Elizabeth said:
“We wanted the ‘cooking’ process to be as natural and with the fewest tests possible…Our decision was to let the process of development happen and we will ‘cross that bridge when we get there’ regarding the types of challenges we will face as a family.”

Jennie // Bun in the oven{Image via Andria Lindquist}

I too am among those who voted “nay” to fetal testing and for all the aforementioned reasons. Pregnancy afforded me nine magical months of anticipation from everything to eye color to the sound of that first infant cry. I drove Clark half insane over name choices and nursery patterns, cloth vs. disposable, breast vs. bottle, epidural vs. Glutton For Pain Delivery. Call it “hormones” or “nesting”, but I was gaga over my unborn munchkin and no unnecessary test result was going to spoil that for me.

Genetic experts admittedly cannot predict congenital defects with ultimate certainty. They simply hope to educate parents, and yet the vast majority of us {myself included} don’t want to be made aware of any potential abnormalities. Ironically, we live in the Age of Awareness where every other T-shirt and rubber bracelet gives voice to another helpless victim of injustice. Unless I have the sympathetic capacity of a cyborg, I will join the discussion about extreme global poverty or human trafficking. I will pledge and petition to raise awareness for a starving child in rural Africa, but when it comes to my own family, my own unborn child, my own incubated hopes and dreams, I don’t want to know. Why is that?

Perhaps it is because I have never woken up in the wee hours contemplating first names for a child born into extreme poverty. I have never labored over the decision to fully vaccinate a victim of child trafficking. Am I heartless to admit that? Or is there something that has to happen to a woman in the delicate process of becoming a mother where she must first become helplessly addicted to her child if she is ever going to have a prayer of becoming a decent advocate for her child’s condition no matter what congenital injustice befalls him or her?

Take for instance the injustice of Autism: If you had asked me a year ago to acknowledge Autism Awareness Month, I would have attended the rally, “liked” the page, ran the race, and bought the T-shirt. But now that I am living with it, I don’t need a poster or a bracelet to remind me of the excruciating fact that it exists. I am aware of Autism during mealtime meltdowns that result in Salem screaming at a near deafening decibel level while reincarnating into one of the Orcs of Middle Earth. I am aware of Autism when I watch him run laps around the produce section chanting the twelve tribes of Israel. I am well aware of Autism when he falls into an inconsolable heap at the cheering conclusion of “Happy Birthday”.

Next thing I know, I am wondering if I had been given the option of knowing that Autism was in the cards for Salem, would I have done anything differently? Let me say for all times’ sake:

MY QUESTION HAS NOTHING TO DO WITH TERMINATION AND EVERYTHING TO DO WITH PREPARATION.

Would I have taken advantage of the extra time to store up the emotional fortitude necessary to raise a child with special needs? Is that even possible? Would I have focussed more on educating myself rather than obsessing over which shade of green bed sheets to purchase for his crib? Would I have given him a better head start if I had been given a better heads up?

My quest for insight led me to one final chat with my new friend, Yvette. Her children are in my son’s special needs preschool class. I thought surely she would share my hindsight suspicions of the value of fetal testing after having delivered a premature set of twins who, much like my own preschooler, have their own onion of developmental delays which she is courageously peeling back one tearful layer at a time. She empathized with my line of questioning, but she too decided against fetal genetic testing. She described the current agonizing anticipation of whether or not her child is going to fulfill the clinical predictions or overcome the odds of a looming diagnosis. It is this “waiting to exhale” {as she so eloquently stated} that ought to be overshadowed by the anticipation of a child… a child that has a first name and a personality and likes and dislikes and unique features… all of the things that cannot be defined by a diagnosis. As she spoke, I realized that by first becoming a fierce lover of our child then and only then are we qualified to grieve and advocate on behalf of our child’s condition should one arise.

If you have not already de-friended me for tiptoeing {yet again} on such a sensitive health topic, I thank you for joining me in a discussion that has helped me to personally find rest in the deeper awareness of myself as a mother.

Love the child.

Loathe the condition.

God, help me always distinguish between the two.

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2 Comments

  1. Yvette said,

    April 8, 2013 at 7:25 pm

    Even if I had known what the future held for me and my twins, there was nothing that could have prepared me for what was to come. The only peace I feel I have had through this process is my faith in God and that although our path would not be easy, we will be okay. Loved your blog posting. You are an awesome Mom and doing wonderful job.

    Yvette


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