Thursday, February 24, 2011

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?


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.

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.

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.


Don said...

Good read, and one that allowed me to feel the emotions within each of your voices. I cannot imagine how it would feel to be in either of your shoes as Tina voiced opinions I am sure neither of you wanted to hear. But I will say that your positive attitudes combined with the fact that Z isn't trying to hear such doomsday forecast upon his life and future is a beautiful thing.

Wishing the best and everything the heart desires.

Red Cardigan said...

Alisha, I'm so sorry you had to experience that. This sort of thing has gotten way out of hand; before long people with hereditary nearsightedness will be asked about "termination." It's insane.

Just as a little encouragement: when my mom was expecting my youngest brother, she had a similar experience with a doctor who insisted that she might be carrying a "non-life-compatible being" and wanting to know what she'd do in case of "defects." Mom made her pro-life views pretty clear (and found another doctor, if I recall correctly).

She was 47. The baby was number 9 in our family. My youngest brother is now in college. He's probably more "life-compatible" than I am, to tell the truth. :)

Z will be wonderful, and he has wonderful parents.

Alisha De Freitas said...

Don, thank you for your kind comment. To be honest, I've been battling Tina's words for the past six weeks. They keep creeping back up and dampening my spirit. Not so much for Z- I honestly feel our baby is healthy. But for me and everyone else who face health issues. That a doctor could simply write us off as genetic errors. Because the way I see it, if they encourage mothers to terminate because of disability, than I cannot see how they can view us as having the same worth as people who don't. I also wonder if maybe Erin is on to something about the nearsighted statement. When does it stop?

For the record, the tests have shown that my muscular and autonomic nerves are normal, meaning my muscles feel weak but aren't. It also means other functions, like blinking, swallowing, breathing are all normal. I work full time, go shopping (okay, mainly for food or books, but what else do I need?), wash dishes, pay my bills, drive, clean the tub, make love to my husband... most people don't even think anything is wrong since most of the time, my walk is normal (no drooping, slowness, etc.) So what then, makes my life less than, even by graduates of the Margaret Sanger School of Eugenics?

@Erin, my mother could relate to your mom's story. She was also told to abort her child- me. You see, my mother was on medication when she became pregnant with me, and was advised in no uncertain terms that I would be born deformed and severely retarded. They even sent her to a specialist to push her to terminate. She didn't, obviously. And both my parents constantly remarked at how they wanted to bring me back there growing up, so they could off their straight "A", Honor Roll, valedictorian, cheerleader daughter. The story has never felt so real for me as that Friday six weeks ago. Thank you for your comment.

David H. said...

Thank you for sharing your experience. I am sorry such apalling behavior marred a portion of what truly is a beautiful and once-in-a-lifetime experience. Take heart: the people who are estatic at the mere presence of Baby Z far outnumber the few who, for whatever reason, see him or her as less than worthy of a simple chance.

This experience must have strengthened the resolve of you and K. Baby Z will thrive with such loving parents. Your compassion is an bright example against callous indifference. In other words, it gives me hope. And hope is powerful.

Alisha De Freitas said...

Oh, and I almost forgot, a little addendum. After the sonogram, blood and urine samples were taken. A week later, I got the call that Z showed no signs of Down's Syndrome. :-)

Alisha De Freitas said...

@David, thank you. We go back in two weeks. We'll be requesting another genetic counselor.

We're both looking forward to seeing how much Z has grown.

Nancy said...

Alisha & K - I am so sorry you are going through this. Your baby Z is so lucky that you are his/her parents. You have much love between you, and you will get through this. Best wishes to you both - prayers and only good thoughts are going your way.

Maria said...

My dearest Alisha,
I read ur post silently and then asked Danny if would sit and 8 read it aloud to him. After the third paragraph he asked me to stop I turned to look at him and he had tears in his eyes. I asked "what's wrong?"... he sighed and just looked away, he said its like being there again...
See we went through the same exact thing, with a genetic counselor by the same name! The news don't shock as much as the coldness that penetrates ones heart and drills into every emotion of expecting parents.
I told you I found out the sex of my baby, his name is Fernando Gabriel. I left that office with percentages and fractions floating on my head, but in my heart just a huge feeling of hope. Even before I. Found out he was a he, I knew he was fine. Now with a second trimester screening completed and the reassurance that Fernando is good and healthy all I can do is thank Christ our Lord. Baby Z will be fine hon.

I know I don't have to tell u trust in him...u taught me to do that. :) be well

Alan said...

Alisha, Im so sorry you had to go through that. However hopefully even though you will go through your life loving and adoring little Z, now having gone through this you will be ever so more proud and honored to have such a child in your life. Like your parents wanted to bring you to their previous "doctors"(Doctors do no harm, "doctors" do harm within the confines of the law) I know that every glance you take of little Z, you will be filled with the joy and pride of knowing that your decision was not only the right one, it was the only one, and not only was it the only one, it was made with your and K's never ending love for your newborn. Situations like this only confirm why loving and Godly people like you an K should bring children into this world. I know you both will love this child with everything in you. I will be praying for all three of you!

Alisha De Freitas said...

@Nancy, thank you for your kind words. K and I pray we'll be great parents to Z everyday.

@Maria, I'm so sorry you and Danny had to go through this, too! What is this, open season on expectant parents? Advise us to terminate BEFORE tests are even taken and results come in??? Fernando Gabriel... Aww, he's a little angel already! I'm so unbelievably happy for you two. It's crazy watching your friends progress in life- from college coed, to professional, to wife and now mother. Makes my heart swell.

@Alan, we pray we'll be as good of parents to Z as you and your wife are to your little girl. I can't wait to meet Z- this person who has changed my life so drastically, and we haven't even met yet!

Brooke Farmer said...

Pretty fucking intense.

That is a compliment.

Alisha De Freitas said...

BWAH HA HA HA, Brooke, that has to be one of the best compliments I have ever received. So awesome, I'll be using it as a review... totally made my day. You rock.

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