East Of Eden

"A curious mix of the relevant and reverential"


Circles, Squares & Z

We sat, mouths slightly agape, staring. We were shocked and hurt, K and I. We had just been counseled briefly that the child inside me might be genetically "defective". And then asked flatly, if we would like to consider terminating the pregnancy?

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Hospital-stark-hallway thum


Six weeks ago, K and I left work early to go the hospital where I plan to have Z, named after an early Christian saint and martyr evoked at times when peace is needed.

We sat in the full waiting room with other expectant parents, waiting to be called. After an hour, a doctor assigned to be our genetic counselor came out and said she needed five minutes to review my file. I suppose she hadn't expected the additional medical records I had brought along, results of various tests related to my sensory neuropathy ( for info on this, click here or here). But whenever I go to a new doctor, I tag along a 20 page summary of the litany of tests I've gone through in the past two years. So, I sat back down for another fifteen minutes and waited for "Tina" to return.


Tina came back and ushered us into her small office with a stack of files on the desk and some family photos spread about. She quickly explained I would have a sonogram done to look for physical abnormalities, and blood and urine samples taken as well. Then there were questions, many: about my ethnic background, family history, and an illnesses with an emphasis on Down's Syndrome. The line of questioning- or maybe the cold tone in which they were asked- made K uncomfortable, and he shifted several times in his chair. I had warned him this appointment would be different from the others at my OBGYN. This was the First Trimester Screening, and they were looking... no, searching for problems. "What if they find something," he asked, "it's not like we won't love and care for Z." I responded, "Well, there are many other parents who don't want a Downs Syndrome baby, so they'll choose an abortion. That's why the rate of Down's has fallen so much. People choose to terminate." K looked stunned.

Tina pulled out a large sheet of legal paper turning it landscape, and then began drawing circles and squares, each shape representing one of our family members. "Uh, huh, and how many siblings? A brother and sister, okay. Any half-siblings? No. Alright...," she said while making my older brother Joe a square and younger sister Joscelyne a circle. Then lines came from them and more shapes appeared in place of their kids.

"So I see from reviewing your medical records you have a neuropathy. It could be caused by Charcot Marie-Tooth. Do you know what that is?" "Yes," I replied, but that was ruled out. I had a biopsy done last April and they tested for it and that was a nega..." Tina sat up in her chair. "I see." Her brain seemed to really be turning this over. "There are many hereditary diseases that could be causing your symptoms. Have you had a genetics test done?" "No, but as I said, they did do a nerve biopsy and tested the nerve itself for a number of diseases and it was inconclusive. They also took vials... I think it's more like gallons at this point... and tested them, along with MRIs and nerve conduction tests and they haven't nailed anything down." Tina turned quickly and jotted down names and numbers of geneticists she knew. "But only take this number if you're going to actually call. And you can tell them you're pregnant so they'll see you sooner." I took the card, but did not feel encouraged. Her tone was just slightly north of curt, and her manner a bit cold. I realized I was sitting forward in my chair, in the type of position I would if I knew I'd have to spring up suddenly. I was at least as uncomfortable as K.

 

Checkerboard-squares-and-circles



Tina's cell phone vibrated and she rushed to answer. "Oh, I have to get this." She picked up and began to speak in Italian, her tone suddenly sweet and friendly. My eyes fell on the card she handed me, and I noticed the Italian surname. I glanced at K and he still looked uncomfortable. And increasingly annoyed. I looked back at Tina, and she continued the lighthearted conversation. It was as if we had suddenly disappeared from the room. After about five minutes, she hung up and mumbled an apology. The dead voice returned, and she pushed the geometric family tree back across her desk at us. "So your illness could be genetic. It could've been inherited from both your parents. It it was, then you and your siblings could have it." She then began to explain it could be a mitochondrial fluke, and my mother the sole culprit. "... And then your sister would pass it on to her two children," she went on. I increasingly felt my spirit falling. The way she spoke about my family- my sister, mother, little niece, as if we weren't people, just giant petri dishes full of disease.

She finally got to her concluding question, asking as if referencing the cyst I had removed from my cheek last year, if I'd like to terminate the pregnancy. As if I hadn't started hoping, dreaming and praying for this child. As if we hadn't already picked a name. As if Baby Z was a mistake.

rumors-online



K sat stunned. And for a good three seconds, I did, too. But then these words came out: "Abortion is NOT an option. I know I have this sensory neuropathy. And I know it MIGHT be hereditary. But I wouldn't have an abortion because I MIGHT have a hereditary disease that I MIGHT pass on to my child." Tina looked at me blankly, still holding her pen above the blue ink shapes connected by straight lines. I looked at Z, sex unknown, drawn as a triangle. She pulled the tree back, and reiterated I call the geneticists and ushered us out of the office.

Back in the waiting room, we sat numb. "She talked about our baby like we should just throw out an old pair of  sneakers," K said. I fought back tears. "I feel... like she thinks Z shouldn't be here... but neither should I. Like my life isn't worthwhile." I felt humiliated.

A nurse called my name. It was sonogram time. "I feel  like just leaving now," I said to K. "Let's go." My name was called again. I got up... and followed the nurse into the darkened sonogram room. I sat down, and a few minutes later, I watched in amazement as my baby's little body appeared, in 3D, on a flatscreen TV. Suddenly, the little legs kicked. And then, a hand went from Baby Z's mouth to hitting. K, now 180 degrees mentally from two minutes ago, grabbed my hand. Z began an earnest attack at the invading bump- the ultrasound wand- swatting for space. The peppy ultrasound tech said, "My, you have an active little one!" And I quietly said I'm sorry, even though I wasn't. I was proud. Proud of my little fighter. Proud that Z was far more than three lines on a white piece of paper or defective cells clumped together or a mistake needing to be rectified. Z, the warrior baby.

 

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