Thursday, June 25, 2015

Shades of Blue

"Andrea Lopez."

I stood, a familiar fear coursing through my body.  Marcos rose with me and we proceeded to the door where we were stopped by the ultrasound tech.  "Just you for now.  We'll come back for him when the first half is done."

I froze and could feel Marcos' fingers gently prodding me forward.  "Please.  I have history of anencephaly.  I don't want to be alone."

She rolled her eyes with a microscopic movement, but relented.  "I'm behind anyway.  Come on in."

Four years, two last names, one yellow house and my son's lifetime had gone by since my world was rattled by the fatal diagnosis, anencephaly.  Still, the machine, the sterility of the room, the sterility of the staff brought it all back to me.  What would have been Gabriel's fourth birthday was less than a week away and somehow even in his absence, he occupied the front of my brain.  As I lay on the exam table for what is for most women a highly-anticipated moment I prepared to receive the bad news that I presumed she would be discovering, a defense-mechanism inevitably developed by members of the infant loss community.

The tech began to explain to Marcos that she would be taking many measurements and making quite a few notes during the first half of the exam.  They don't usually allow spouses or family or friends in during that time because they get nervous and start to think something is wrong when it all takes so long.  Her reasoning was lost on me - I had already received the worst news an expectant mother could get.  Besides, Marcos is unshakeable, and I was already rattled to my core.  When something went wrong, I would know right away.  She couldn't pull one over on me anyway.  I was on to her, from the first shift in her eyes.

She began to ask questions about Gabriel, though I noted that she never asked his name, likely presuming he didn't have one.  "How long did you carry your anencephalic baby?"

"40 weeks, 1 day."

"Oh."  Her face gave away her surprise.  "So you went all the way to term. How long was he with you?"

"Ten days. I guess that's pretty extraordinary."

"Oh.  Yes, that is unusual."  Somehow through the course of the forced conversation it was revealed that I brought Gabriel home from the hospital. "You brought him home?" Her incredulity shone.  Gabriel's story is remarkable, no doubt an anomaly in her anomalous experience with anencephaly.

Marcos was invited to stand next to me to view the images of our baby.  She showed us the heart, the different organs, the active hands.  "I can't tell you what you're seeing, but I can show you."  Her wand scanned over the bright, round skull.  I might never have known how perfect it is, if I had never been exposed to how perfectly its absence appears.  A few tears rolled down my face.  Until this baby is here, until I see and touch its head, I won't feel secure in its existence, but these images would carry me over the remainder of the pregnancy, at least.

The whirlwind that is the ten day long celebration of Gabriel's life followed in a flurry of cupcakes and Post-It Notes and a baseball game and Magic Mullet Run promotion. As seems to happen every year, it got both easier and more difficult than the years past.  Time allows me to feel some sense of security in the life ahead of me, but time also puts more distance between me and the physical presence of my son.  I would peak at the blueberry bush from my bedroom window, intent on spending some time with it to absorb its inspiration and prompt my annual blog about the plant.  But life seemed to keep getting in the way.  This year Eden demands my attention and was folded into the ten days of activities.  She has her own needs, and meeting them is part of what sustains me.  On the anniversary of Gabriel's passing Marcos and I took Eden to release balloons with our family and play at the park.  Things I will never get to do with Gabriel, I finally get to do with a child of my own.

In the days following, I finally took time to listen to my voicemail messages, which I tend to gather for a month before reviewing.  A call from Kaiser stopped me cold.  The genetic counselor needed me to return her call, and she would send me an e-mail with the same information.  In the e-mail she reported that a normal variant had been detected, an oxymoron when one considers normal means "regular" and "variant" means "exhibiting variety or diversity."  Doctors are so fucking stupid.

I called the genetic counseling department and was advised my particular counselor would be out for the day, but they would try to find someone to review my file and get back to me.  No one did.  I must have called eight times the following morning, this morning, but got the department's voicemail instead.  When my phone finally rang, I answered quickly.

"Is this Andrea Lopez?"


"This is Kristy with Kaiser.  You called."

"You called first."

"Yes.  I have your ultrasound results.  Kaiser requires us to go over even normal variants with our patients."  By that time I had Googled "normal variants" and knew that they were generally nothing of concern, but still, I needed a name for my child's particular variant.


"A choroid plexus cyst was detected. . ."

"Spell that."

"C-h-o-r-o-i-d new word p-l-. . ." by then the phrase had presented itself in my search bar, so I clicked the term and followed a link as she babbled.

"Why does it say here that the cyst is sometimes associated with Trisomy 18?"

"Well, I'm getting to that.  Sometimes it is.  In very few cases.  It's not a very high chance."

"There wasn't a very high likelihood of my child having anencephaly, but we were the one in one thousand."

"You refused any blood testing that would have told us sooner if Trisomy 18 were present," she said, with some bite to her tone.  I wondered if she always dealt with such delicate subjects so coarsely.  "When Trisomy 18 is present there are other indicators during the ultrasound, none of which were present in yours."  She could have led off with that. "Underdevelopment, a small baby, lack of fetal movement, especially hand movement."  My mind flicked back to the ultrasound in Urgent Care a few months ago, during which the baby had waved at us assuredly.  "Trisomy 18 is a chromosomal defect. It has no relation to anencephaly."  Again my mind wandered, this time to the genetic counselor I saw after Gabriel's diagnosis, who assured me that the anencephaly had nothing to do with the miscarriage.  The miscarriage was likely the result of a chromosomal defect.  As my brain raced I forced my eyes back to the page of information before me, soothing myself with the facts at hand.  Fetuses with Trisomy 18 almost always demonstrate abnormalities on ultrasound in addition to choroid plexus cysts.  The precise rate of risk is difficult to estimate and somewhat controversial as most doctors believe it is well under 1 percent 1 in 1,000 pregnancies result in anencephaly and a fetus with choroid plexus present but an otherwise normal ultrasound has a better than 99% chance of not having Trisomy 18.  I have every reason to believe there is no cause for alarm.

"No further treatment is indicated at this time.  In most cases the cyst resolves before delivery.  Even if it doesn't, it is benign."  I allowed reason to wash over me.  "You could have amniocentesis, but that carries risk.  I find that most women who reject early blood testing will almost certainly reject the amnio."

"It won't matter what an amnio might tell me."  It wouldn't.  I've already fallen in love with this baby, even if it is a guarded, cautious love, it is relentless and unconditional at the same time.  That is my nature, in the aftermath of the storm that was Gabriel, and really, always.  I love with a careful abandon, knowing it might hurt, but knowing I'm going to do it anyway and face the consequences if and when they arise.  I live in shades of blue, bright and bold like the sky, dark and dreary like the storm, soft and soothing like the baby blue of Gabriel's blankets and clothes, deep and true like the promise represented in my sapphire wedding ring.  But always, always blue.

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