Showing posts with label fetal MRI. Show all posts
Showing posts with label fetal MRI. Show all posts

2.13.2019

choices

Recently, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With news on abortion trending, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the miscarried fetus or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to assent, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over fifteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned severe visual impairments or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after fifteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Yesterday, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:
I’ll be honest. This week’s news cycle has been exhausting and painful. 
This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 
Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of men in suits and ties meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding and empathy come in, not hyperbolic, false propaganda and political posturing by men in positions of power who'll never be pregnant. We need to listen to women's stories and trust them to make the best well-informed choices they can when their lives turn upside down.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With the future of Roe vs. Wade now in jeopardy, and access to safe, legal abortion becoming harder in many states due to anti-choice efforts, our mothers, daughters, sisters, wives and partners are facing similar peril, when what they need most is love, understanding, support, and the ability to make their own choices.

1.30.2019

bombshell

Fifteen years ago, I reclined in the same green couch I'm sitting in now, resting and reflecting as I watched the world go by outside a southern window. I was no longer allowed to walk the dog or swim a mile or grocery shop. I wasn't allowed to go outside. Michael and I had stopped attending our hypnobirthing classes, stopped practicing our script, and I had stopped showing up for my prenatal yoga classes. I and the baby in my belly, who rarely and barely moved, and who still had six to eight weeks to develop, simply had to sit and wait it out.

Days earlier, a doctor had dropped a bomb on us. A thirty-two-week sonogram had revealed an anomaly in our fetus' brain: enlarged lateral ventricles, aka ventriculomegaly. I'll never forget the doctor's words to us:

"This is something you need to worry about." 

The discovery had led us to Boston where within one twenty-four-hour visit I underwent numerous additional sonograms, a CAT-scan, several blood tests, one fetal MRI, and a five-hour IVIG, otherwise known as intravenous immunoglobulin. All of this was because of an opinion held by bunch of pediatric neurologists, radiologists and neonatologists who thought they had found evidence of intraventricular and subdural brain bleeds leading to a blocked fistula. This blockage, they hypothesized, caused a backup of cerebral spinal fluid and the ballooning of our baby's lateral ventricles which in turn damaged the surrounding white matter. Their causal theory for the bleeds, based on a false-positive blood test result, was that there was a platelet incompatibility between me and Michael triggering my antibodies to attack my fetus' platelets. The consensus was a scheduled, thirty-five-week cesarean at Boston's Children's Hospital meant to avoid further trauma and injury which a vaginal birth might cause.

After the bombshell, I remember being exhausted, anxious and afraid. I don't remember being brave. I imagine Michael felt the same. So we sat tight in the frigid winter weather, wondering if our baby would be okay, wondering if he'd ever crawl or walk or talk or, as one neurologist told us was possible, might be completely normal. I remember wondering, after such an uneventful and healthy pregnancy, why it turned out this way.

I still wonder to this day.

February 3, 2004

2.03.2011

gamma globulin

Seven years ago this week Michael and I had just returned home from Beth Israel Deaconess and Children’s Hospitals in Boston. At 33 weeks gestation, I had spent the day undergoing a tiresome series of tests and screenings, including a fetal MRI. The radiologists and neurologists believed they saw in the magnetic images evidence of slight hemorrhaging in Calvin’s brain. They surmised a clot had created a backup of cerebral spinal fluid causing his lateral ventricles to enlarge, thus damaging a significant amount of his white matter. The theory was that a platelet incompatibility between Michael and me might have induced the bleeding. Their solution was to give me an IVIG–Intravenous Gamma Globulin—a plasma protein blood product described to me as an anti-antibody-antibody. In other words, the IVIG was meant to kill off my antibodies, which appeared to be killing off Calvin’s platelets. At least that was the idea.

The procedure, which took place in a sterile florescent-lit room at five o’clock in the evening, and which was supposed to take only two or three hours, took nine. I laid in bed while the nurse administered fluid from several consecutive clear plastic IV bags, drop by drop, into the vein in my arm. The contents of the bags were painstakingly concocted in the blood bank in the hospital's bowels, no doubt by white-jacketed technicians wearing latex gloves. What was nine hours seemed more like an eternity, staring at mostly blank walls punctuated with shining fixtures, black hoses and plastic wrapped instruments. The minutes inched by as we sat wearily, the desolation broken, occasionally, by squeaks and shuffles of rubber clogs on the waxed linoleum floor. At 2:30 a.m. we finally left the hospital, completely fatigued, and drove on deserted streets to the nearby home of a kind physician—a friend of my sister’s. She met us at the door and showed us quietly downstairs to a dimly lit, cozy basement room. After a solid, albeit brief, sleep we awoke early and embarked on our three hour drive home to Maine.

In an effort to avoid further complications in utero, an early cesarean had been scheduled, in Boston, with scores of specialists and some blood bank donor platelets for Calvin if he needed them. But a few days after returning home from Boston, not long after the IVIG, in the middle of the night my water broke. We were at week 34, in the heart of an ice storm and Calvin had started making his way into the world.

Please donate this month to epilepsy research for a cure, on behalf of Calvin, at:

http://www.calvinscure.com

1.27.2011

fetal mri

Calvin’s first MRI was in utero. We were about thirty-three weeks along.

Michael and I had learned the previous week, from an insensitive witch (doctor), that the lateral ventricles in our baby’s brain were enlarged. We ignored the docs advice to come back in two weeks by opting never to see her again. By good fortune, we came across a study of the diagnosed condition—ventriculomegaly—underway at a Boston hospital.

The events in the hospital were a blur, shuffling between obstetricians, neonatologists, neurologists and radiologists while running blood tests, genetic screenings, and sonograms. Near the end of the day, exhausted and fraught with worry, the only test left was a fetal MRI. Michael and I sat holding hands on teal fabric chairs amongst fake plants, and painfully awaited our turn. I felt alone and frightened, trying to hold back my tears of trepidation. I knew Michael felt the same.

Finally, I was lead to a changing-room to disrobe for the procedure. The stark space had bare plywood walls, a single hook on which to hang clothes and a cheap mirror fastened slightly askew on the back of the door. Against one wall were stacks of clean folded “johnnies”. I stripped down, shivering, not so much from cold as from fear and fatigue. Standing naked in front of the mirror I regarded my taut round belly and wondered how and when it all went so wrong. I was so afraid—afraid of what I knew about my precious child’s brain, and afraid of the unknown. Slumped in sorrow, my unwashed hair hanging in strings before my face, I feebly chose a pale printed johnny. Surprised and dispirited by it’s weightlessness, I found each gaping one-size-fits-all armhole and positioned the opening in front as I had been advised. The flimsy gown could have wrapped around me nearly twice if not for Calvin.  For a moment I stood trembling beneath the thin garment, which fell at my shins revealing shoeless feet. I had never felt so vulnerable in all my life, and in the mirror’s reflection I watched my screwed-up face start to sob uncontrollably.

Michael appeared and I gave him my wedding band—metal cannot be worn inside the powerful magnet. He escorted me to the imaging room, kissed me and returned to the waiting area. The technician laid me down on the conveyor and strapped me in good, feet first, on my back. With a push of a button I was slowly inserted into the massive, white hollow tube. It was a much narrower opening than I had imagined and I felt as if my pregnant belly might graze the cylinder as I passed through. The technician exited the room and left me alone, except for Calvin. A voice spoke to me over an intercom from the darkened side of a large window giving me instructions as to when to hold my breath for the making of the images. Deep, guttural sounds and jolting buzzes, like no other sounds I had heard before, bellowed from the machine's bowels. The noises were freakish, futuristic and jarring, contributing to the whole surreal experience. But somehow, knowing that Calvin was with me—inside me—and we were going through it together, gave me a sense of calm. I kept telling him that everything was going to be okay and not to be afraid and he seemed to be doing the same for me.

After an hour or so I emerged from the white monstrosity that had swallowed me whole. Now all we had to do—which was no easy job—was to wait for the results and find out what needed to happen next.

ventriculomegaly