The balloons float upwards. Stark white against a deep blue sky, dozens and dozens bob back and forth, buffeted by invisible currents of air that carry them from the silent crowd below. For a fleeting minute, it’s possible to read the names in the tangled white mass. There’s “Julia,” “Michael,” “Benjamin,” the uneven black letters written by the mothers and fathers whose faces are turned upwards. Clustered in small groups, some holding hands, they have gathered on the lawn of a hospital park in the small town of Suffern, New York, to mark a loss unlike any other: The balloons represent terminated pregnancies, halted halfway through their course because of defects found during prenatal testing. Drifting reminders of the burden of choice. Quickly, they disentangle into individual threads that disappear into the sky, and the crowd begins to shift. The ceremony is over now.
The decision to have a second child was something my husband, Evan, and I mostly took for granted. It was easy to get pregnant the first time around, and two years later it proved no different. Watching the pink lines appear on the pregnancy stick brought excitement, but also expectation. Still, there was no denying the joy of seeing the first blurry image around eight weeks, an otherworldly creature floating in space, the promise of the future caught by ultrasound waves.
Mesmerized by the tadpole-like images moving on the screen, I listened only in part as my obstetrician made a case for amniocentesis (the analysis of amniotic fluid). With age comes an increased likelihood of fetal abnormality: Approaching the age of 35, I had a higher-than-average risk for a defect or disease. “I think you might want to consider,” he said, while gliding the sonogram probe back and forth on my stomach. But I was a healthy woman who barely made the age cut-off, and there were no birth disorders in my husband’s family or mine. Why go through with something so uncomfortable that might introduce infection, even lead to miscarriage? “Maybe,” I replied, as the doctor pressed the probe more firmly into my skin to better capture the movements inside.
Prenatal testing can seem ubiquitous today, as ingrained into the composite of a pregnancy regimen as taking vitamin supplements or abstaining from alcohol, the benchmarks of modern obstetrical care unknown to previous generations. Earlier this year, the American College of Obstetricians and Gynecologists released new guidelines recommending that all pregnant women receive screenings for chromosome abnormalities, regardless of age, further heralding the use of screening tools like amniocentesis and chorionic villus sampling, or CVS (the analysis of placenta cells).
The science of screening can be dazzling: Several years ago, a series of television commercials developed by General Electric showed startlingly clear images of a developing fetus, made possible by a 3-D sonogram technique the company had recently introduced to the market. More important than pretty pictures, of course, is the knowledge that everything is fine with the baby, a priceless payoff for the discomfort of needles and probes. But as science predicts with ever more accuracy the biological destiny of a developing life, what choices exist for women and their partners faced with the perplexing ordeal of a devastating result?
The phone call came on a January morning when piles of icy snow covered the earth, the aftermath of a New Year’s Eve storm that welcomed the new year by transforming everything into stillness. I was glad to hear my doctor’s voice; I’d planned on calling him that day to check on the results from the previous week’s test, so I shifted my attention away from my two-year-old daughter, who was furiously trying to kick off snow boots covered in slush.
I had never heard the word “trisomy” before, and I concentrated on tracing it again and again on a notepad lying nearby as he continued to talk, unsure of what he was really saying. He wasn’t qualified to interpret the “unusual” results, so he’d made an appointment with the head of the genetics department of the area’s largest teaching hospital, someone who could better explain what all of it meant.
“I’ll see what day my husband can get away from work,” I told him, glancing through the window at tree branches drooping from the weight of the storm’s aftermath, a carpet of white sweeping from their roots to the icy Hudson River below.
The pause that followed was infinitesimal. How long? One beat, two, a few seconds at the most. But enough to glance back at scribbles on a pad while feeling the first pull of panic as the adrenaline coursed through me in reaction to his careful response, “The appointment is for today, so you’ll need to reach him now.”
The expert was a clinical geneticist (dealing with the role of genetics in disease) and cytogeneticist (dealing with the structure of chromosomes). He had almost four decades of experience in dysmorphology (the study of structural birth defects and congenital problems) and developmental disorders. For everything you didn’t expect to know when expecting, he was the one.
The meeting took place in a cramped office, part of a warren of ugly rooms running the length of an artificially lit basement flush with a busy highway. The snow plows had not yet cleared the parking lot surface and my husband cursed softly as we circled around and around in search of an open space.
Once inside, a genetic counselor cheerfully drew up a quick family history, registering surprise at how few relatives we had on each side, “No, really? There must be more you’ve forgotten,” she said, then deftly skipped from one random question to the next. “History of cancer?” (Yes, on one side.) “Amount of caffeine consumed daily? (Two or three cups.) “Ever indulged in crack cocaine?” (Negative.)
Satisfied, she ushered us in to see the specialist, whose charm, like his surroundings, was not immediately apparent. But he was the expert. So as my husband and I squeezed into chairs positioned too close to a desk piled high with papers, I didn’t dwell on the fact that he hadn’t looked up from the chart to greet us, but instead directed a question to the counselor, now standing at the door, asking her whether “the patient” had any history of drug use. The patient did not, which I told him myself.
Against the background thrum of an air conditioning unit failing miserably to temper the room’s heat, the doctor began to speak, informing us first that what he was about to explain typically took his medical students weeks to understand. I’m not sure why he felt it necessary to preface his speech with that particular warning. As it turned out, it took mere seconds to get the gist of what he was saying: Our situation was a nightmare.
Chromosomes are the individual threads of DNA present in the cells of the body that carry genetic information. Determining everything from hair color to the ability of the liver to function, they tell the story of who we are. In healthy cell formation there are 23 pairs of chromosomes, making a total of 46. But in rare cases, an error can occur—whether as a result of a damaged sperm or egg, or some mishap during the cell division that occurs immediately after conception. Such an error can result in a missing chromosome (Monosomy) or the addition of one extra (Trisomy).
One of most common genetic abnormalities is Trisomy 21, or Down syndrome, the condition in which there is an extra 21st chromosome, making a total of 47 instead of 46. Down syndrome occurs in approximately one out of every 800 to 1,000 births. More unusual, but not unheard of, is Edwards syndrome or Trisomy 18, characterized by mental and physical deficiencies. This occurs in approximately one out of every 5,000 births.
Our situation was even more obscure. The amniocentesis had shown Trisomy 4 mosaicism, an extra fourth chromosome. For this condition, there was no colloquial name, given its extraordinarily rare occurrence. Our gray-haired expert had never personally seen a case of Trisomy 4 mosaicism and was unaware of any live births involving this disorder. To prepare for our hastily arranged appointment, he and his staff had searched the medical literature to see if there were any reported cases.
They found two. One involved a child who had reached the first year of life and appeared to be developing normally. The second involved another infant who had also reached the age of one. But this child suffered from a multitude of congenital anomalies.
In the minutes that followed there were the non-specific phrases that are familiar to anyone who has ever been the recipient of bad news from a doctor: “The chances are,” they will say. Or “Studies indicate.” In our case, it was: “It’s hard to say,” and “Given the unusual circumstances.” This part of the conversation took place entirely between the doctor and Evan, a verbal volley of questions and answers that was thorough and exacting, but devoid of any emotion, the sort of exchange you might expect from a doctor and lawyer, each of them confident in their field of expertise. I found the clinical exchange strangely comforting, a temporary forestalling of what was really at stake, and I listened in silence as they went back and forth. There came a moment toward the end of the conversation, however, when my husband became frustrated by the doctor’s vague responses and pressed for a more definitive answer as to what would happen to our baby. We wanted specifics.
The doctor took some time before responding, leaning toward us while pushing the pads of his fingers together in a steeple-like gesture, drawing the tips to rest against his pursed mouth before lowering them as he began to speak. “There is great risk here that the baby will be born with some deformity or with mental deficiency,” he said, his voice measured, the gaze that had failed to meet us when we first sat down, now fixed as we stared back in silence. He then began to list, one by one, the various components of the body that might be marked for abnormalities, his voice a human metronome that recounted in a slow but steady rhythm, “The brain, the heart, the liver, the lungs…” He paused only once during the anatomical inventory, to hand me a box of tissues that was sitting on the desk and that was just beyond the reach of my hand.
A common misconception regarding prenatal testing is that it can provide a definitive answer. It does not. The screening tools of amniocentesis, CVS, blood sampling and sonogram search for biochemical markers, gene mutations and irregularities that can indicate the potential for illness and disability, but not their certainty. It is not an exaggeration to say that in almost every case where an abnormality is detected, there is an inherent ambiguity in that result as to how severe the impact will be, room enough for doubt to creep in, for hope and for faith, all the factors that conspire to create a choice.
Listening to the doctor’s words, I had no hope, and faith was nowhere to be found. Instead was anguish and disbelief, but there was no ambiguity in the response that I swiftly gave. “We have to end this now,” I said, lifting my head to face the expert, who nodded his head in a kind of agreement. I was grateful for that, and for the feel of my husband’s hand, which had reached over to take mine, as well as for the kindness of the genetic counselor, who walked over to touch me on the shoulder. But I was aware just the same that, despite the support shown in that room, there was one factor that was entirely unambiguous: this decision was mine.
The following day my husband and I met with our obstetrician to go over our options. Terminating a pregnancy is legal in New York State up to 24 weeks. But, as we were to learn in our second impromptu medical lesson in just as many days, a late-term abortion is considerably more complicated than ending a pregnancy within the first trimester. It is also far less common: Of the 1.29 million abortions performed in the United States in 2002 (the most recent statistics available), approximately 11 percent occurred after 12 weeks, according to the Alan Guttmacher Institute, the New York-based research group that supports abortion rights. That number is confirmed by a report by the Centers of Disease Control, which translates the 11 percent into approximately 142,000 abortions. While there is scant available research to indicate what percentage of these are undertaken by women because of genetic disorders, doctors and genetic counselors report that many women facing a diagnosis of a medical anomaly will opt to end the pregnancy.
By far the most common technique used in these cases is dilation and evacuation, or a D&E. Under general anesthesia, the cervix is dilated and the fetus dismembered and removed. It takes, on average, 20 minutes to complete. Far less common is the method known as intact dilation and extraction, or D&X. This is the so-called “partial-birth,” procedure (the political and legal term not generally recognized by the medical field), in which the torso of the fetus is evacuated from the uterus before the skull is decompressed, rendering it small enough to be entirely discharged. At the time of our meeting, this method was still legal, although used in less than one-fifth of one percent of all induced abortions. In April of this year, the Supreme Court upheld the Partial-Birth Abortion Ban Act of 2003.
There is another method that operates on an entirely different principle: induction of labor and delivery. This approach works exactly as it sounds. The woman’s body, with the help of the hormone-based drug prostaglandin, is coerced into birthing a fetus not yet sufficiently developed to exist beyond the confines of the womb. As with a live birth, the woman is conscious throughout—but similar to a regular labor, it takes time.
“My advice is to go for the induced labor,” our obstetrician said. I was almost 20 weeks pregnant, and a D&E would present complications, including the possibility of rupturing some scar tissue that had formed from a previous C-section. “The labor should last 12 to14 hours, 16 at the most, and then you’ll be back home.” He appeared tired as he spoke; gone was the upbeat cheer from all our other meetings. During his explanation, he held his hands in an open grip position in front of his chest, as though squeezing an imaginary ball, but at the end he dropped them to the sides of his chair. “I know this is tough,” he said, and it was unclear whether he was referring to us or to himself.
The horror of what he described did not fully take hold until after we returned back home. Haunted by what we had learned, I could not speak of it to the many friends and family who were calling in support, relying on my husband to deal with them instead, but unwavering in my decision nonetheless. I passed the sleepless hours instinctively putting a hand to my stomach every time the baby kicked, yet certain of the act we had chosen.
Our obstetrician miscalculated the length of the labor by approximately 30 hours. It lasted for two days, an odyssey of fear, panic, tedium and pain that wove themselves together in various permutations, bending the notions of time, space—sanity as well—all within the walls of Labor and Delivery Room #2 on the maternity ward of one of New York’s hospitals, distinguished from the 11 other delivery units on the ward by a pink paper heart the admitting nurse had stuck on the door.
In many ways it felt like going through a war: the fight, the resistance and finally the surrender. A window to the outside provided the markings of time, evening into night, then weak rays of light from a winter dawn bouncing off the metal railings of my bed before the afternoon of clouds of gray lead into a another night of darkness. On the second morning I noticed that it had begun to snow.
Helping us through the ordeal was a special unit of labor and delivery nurses trained in perinatal loss: Francine, Donna, Patty and Christina. Speaking in gentle voices, smelling of soap and powder, they kept vigil and never left my side, even at the end, as our son slipped from one world to the next.
Similar in shape and size to that of the most premature infant, he was unable to draw breath because of lungs not fully formed. After the nurses quietly bathed and wrapped him in blankets, the hospital chaplain read a prayer she had composed during the night as my husband and I took turns holding our son, both of us buried in exhaustion, relief and a staggering sense of sadness.
The Discharge Summary included in my medical file recapitulates the event in the medical shorthand doctors use to convey only what is most essential. Among the compact sentences are the following: “The patient’s past medical history was unremarkable. She has no social habits that are remarkable. The patient has opted for therapeutic termination of pregnancy.
At 11:46 a.m., she had a spontaneous vaginal delivery of a male fetus. She remained stable and she was discharged home.”
The summary is correct; the facts are as stated. But it doesn’t tell the truth. I was far from stable in the following days, haunted by the loss that had me stumbling through the obligations of daily life, including the care of a two-year-old child. In misguided attempts at kindness, those around us would refer to what happened as a miscarriage; worse was when close family members chose to tell others, “They lost the baby.” The sanitized phrase would infuriate me. “We didn’t lose him; we know exactly what happened to him,” I would respond.
Not surprisingly, women who have terminated pregnancies following a medical diagnosis may choose not to share their stories with others, reluctant to be dragged into the abortion debate that has so polarized this country and which entirely negates the nuanced shades of gray that exist between each side’s declaration of black and white. I understood why some would hesitate, but I was consumed with a need to talk, and thanks to a final act of kindness by one of our nurses—“Here, take this number,” she had said to my husband on our way out—I found other women who felt the same.
Aformer labor and delivery nurse, she has been helping parents navigate their way through the pounding grief of perinatal loss for over 20 years, falling into “her calling” by happenstance: she was inspired to bring two of her patients together to talk after each had suffered a stillbirth. “And the worst part was that they shared the same doctor, who never told them about each other,” she shakes her head when we recently meet over chicken wraps and coleslaw at the local diner on the night of one of her meetings.
She often shakes her head in amazement at the lack of understanding when it comes to perinatal loss, even among medical staff, who often provide expertise with little regard as to the fallout that inevitably follows. She never says the word abortion—it’s always a “heartbreaking choice”—but the phrase doesn’t rankle like other euphemisms I’ve heard.
It’s been several years since I’ve met with Pam, but when I accompany her later that night to her meeting, there is a similar crowd to the one I remembered from years back: two female teachers, a husband who works in finance, the wife of a soldier about to embark on his second tour of duty in Iraq and a stay-at-home mother who has the dubious honor of having endured both a stillbirth and a termination. A cross-section of socio-economic and religious backgrounds united in one particular belief: a life worth taking is also a life worth mourning.
Earlier I had asked Pam to give me a number of how many women (and men) she has helped over the years. “Oh Lord, I don’t know, hundreds and hundreds,” she said. “They just have nowhere else to go.”
But even within the world of perinatal loss, there are variations, and these surface during the meeting. The memory of holding her baby, recounted by one mother who terminated her pregnancy via an induction and labor, causes two of the other women to noticeably shift their positions in discomfort. It’s unclear as to why this happens, until one of them confesses that she’s angry she was never given this opportunity, having only been offered a D&E procedure. In response, a couple says that they were told by their obstetrician that an induced labor is too traumatic for most women to endure. Later, I realize that the doctor they are referring to is my own obstetrician, but the knowledge brings with it no reaction other than to confirm what is already clear: there is no easy way.
This year’s annual meeting of the Society for Maternal-Fetal Medicine seemed to address this dilemma in its presentation of new approaches to routine prenatal genetic testing that rely on the mother’s blood as a source of genetic information and can therefore be administered within the first trimester (amniocentesis and sonogram typically cannot register abnormalities and defects until well into the second trimester). Chorionic villius sampling is leading the way in this direction, as it can be performed as early as eight weeks of pregnancy.
The complicated field of prenatal testing and the choices it provides women was foremost on my mind when my husband and I first participated in Pam Magi’s Walk to Remember. The annual event draws hundreds of family members who have experienced perinatal loss. Mothers, fathers, siblings and grandparents gather in a municipal parking lot to mark their individual white balloons with personal messages of love and remembrance. The crowd then snakes its way to a designated park, slowly because of the many strollers and baby paraphernalia, yet festive too, the balloons bobbing frantically about.
Like the others, Evan and I marked a balloon. Maneuvering down Main Street, I clutched the string in my hand, feeling its tug in the air. Instinctively, I placed my other hand on my stomach, in contemplation of what I had learned during a recent visit to the obstetrician to see if I might be pregnant once again.
Feeling the probe dig into my skin, I had been surprised to hear my doctor’s laugh. Turning my head to look at the screen, I had seen what he was pointing out: the staccato-like blips that indicate a heart beating in steady rhythm; just beside it, a second beating heart, looking every bit as strong. Chorionic villus sampling performed at eight weeks would confirm the health of the two babies I was now carrying. Two boys, as it turned out, born exactly one year after our heartbreaking choice.
I continued to contemplate the extraordinary turn of events as the crowd reached its destination. At the designated time, I let go of my balloon, feeling the roughness of the string uncurl against my fingers. As it floated up into the sky, I briefly caught sight of what I had written. In uneven, black letters, it spelled the name my husband and I had given our son after he was born: “Eli,” which means “ascended.” Then, along with all the others, I watched it disappear.
The decision to have a second child was something my husband, Evan, and I mostly took for granted. It was easy to get pregnant the first time around, and two years later it proved no different. Watching the pink lines appear on the pregnancy stick brought excitement, but also expectation. Still, there was no denying the joy of seeing the first blurry image around eight weeks, an otherworldly creature floating in space, the promise of the future caught by ultrasound waves.
Mesmerized by the tadpole-like images moving on the screen, I listened only in part as my obstetrician made a case for amniocentesis (the analysis of amniotic fluid). With age comes an increased likelihood of fetal abnormality: Approaching the age of 35, I had a higher-than-average risk for a defect or disease. “I think you might want to consider,” he said, while gliding the sonogram probe back and forth on my stomach. But I was a healthy woman who barely made the age cut-off, and there were no birth disorders in my husband’s family or mine. Why go through with something so uncomfortable that might introduce infection, even lead to miscarriage? “Maybe,” I replied, as the doctor pressed the probe more firmly into my skin to better capture the movements inside.
Prenatal testing can seem ubiquitous today, as ingrained into the composite of a pregnancy regimen as taking vitamin supplements or abstaining from alcohol, the benchmarks of modern obstetrical care unknown to previous generations. Earlier this year, the American College of Obstetricians and Gynecologists released new guidelines recommending that all pregnant women receive screenings for chromosome abnormalities, regardless of age, further heralding the use of screening tools like amniocentesis and chorionic villus sampling, or CVS (the analysis of placenta cells).
The science of screening can be dazzling: Several years ago, a series of television commercials developed by General Electric showed startlingly clear images of a developing fetus, made possible by a 3-D sonogram technique the company had recently introduced to the market. More important than pretty pictures, of course, is the knowledge that everything is fine with the baby, a priceless payoff for the discomfort of needles and probes. But as science predicts with ever more accuracy the biological destiny of a developing life, what choices exist for women and their partners faced with the perplexing ordeal of a devastating result?
The phone call came on a January morning when piles of icy snow covered the earth, the aftermath of a New Year’s Eve storm that welcomed the new year by transforming everything into stillness. I was glad to hear my doctor’s voice; I’d planned on calling him that day to check on the results from the previous week’s test, so I shifted my attention away from my two-year-old daughter, who was furiously trying to kick off snow boots covered in slush.
I had never heard the word “trisomy” before, and I concentrated on tracing it again and again on a notepad lying nearby as he continued to talk, unsure of what he was really saying. He wasn’t qualified to interpret the “unusual” results, so he’d made an appointment with the head of the genetics department of the area’s largest teaching hospital, someone who could better explain what all of it meant.
“I’ll see what day my husband can get away from work,” I told him, glancing through the window at tree branches drooping from the weight of the storm’s aftermath, a carpet of white sweeping from their roots to the icy Hudson River below.
The pause that followed was infinitesimal. How long? One beat, two, a few seconds at the most. But enough to glance back at scribbles on a pad while feeling the first pull of panic as the adrenaline coursed through me in reaction to his careful response, “The appointment is for today, so you’ll need to reach him now.”
The expert was a clinical geneticist (dealing with the role of genetics in disease) and cytogeneticist (dealing with the structure of chromosomes). He had almost four decades of experience in dysmorphology (the study of structural birth defects and congenital problems) and developmental disorders. For everything you didn’t expect to know when expecting, he was the one.
The meeting took place in a cramped office, part of a warren of ugly rooms running the length of an artificially lit basement flush with a busy highway. The snow plows had not yet cleared the parking lot surface and my husband cursed softly as we circled around and around in search of an open space.
Once inside, a genetic counselor cheerfully drew up a quick family history, registering surprise at how few relatives we had on each side, “No, really? There must be more you’ve forgotten,” she said, then deftly skipped from one random question to the next. “History of cancer?” (Yes, on one side.) “Amount of caffeine consumed daily? (Two or three cups.) “Ever indulged in crack cocaine?” (Negative.)
Satisfied, she ushered us in to see the specialist, whose charm, like his surroundings, was not immediately apparent. But he was the expert. So as my husband and I squeezed into chairs positioned too close to a desk piled high with papers, I didn’t dwell on the fact that he hadn’t looked up from the chart to greet us, but instead directed a question to the counselor, now standing at the door, asking her whether “the patient” had any history of drug use. The patient did not, which I told him myself.
Against the background thrum of an air conditioning unit failing miserably to temper the room’s heat, the doctor began to speak, informing us first that what he was about to explain typically took his medical students weeks to understand. I’m not sure why he felt it necessary to preface his speech with that particular warning. As it turned out, it took mere seconds to get the gist of what he was saying: Our situation was a nightmare.
Chromosomes are the individual threads of DNA present in the cells of the body that carry genetic information. Determining everything from hair color to the ability of the liver to function, they tell the story of who we are. In healthy cell formation there are 23 pairs of chromosomes, making a total of 46. But in rare cases, an error can occur—whether as a result of a damaged sperm or egg, or some mishap during the cell division that occurs immediately after conception. Such an error can result in a missing chromosome (Monosomy) or the addition of one extra (Trisomy).
One of most common genetic abnormalities is Trisomy 21, or Down syndrome, the condition in which there is an extra 21st chromosome, making a total of 47 instead of 46. Down syndrome occurs in approximately one out of every 800 to 1,000 births. More unusual, but not unheard of, is Edwards syndrome or Trisomy 18, characterized by mental and physical deficiencies. This occurs in approximately one out of every 5,000 births.
Our situation was even more obscure. The amniocentesis had shown Trisomy 4 mosaicism, an extra fourth chromosome. For this condition, there was no colloquial name, given its extraordinarily rare occurrence. Our gray-haired expert had never personally seen a case of Trisomy 4 mosaicism and was unaware of any live births involving this disorder. To prepare for our hastily arranged appointment, he and his staff had searched the medical literature to see if there were any reported cases.
They found two. One involved a child who had reached the first year of life and appeared to be developing normally. The second involved another infant who had also reached the age of one. But this child suffered from a multitude of congenital anomalies.
In the minutes that followed there were the non-specific phrases that are familiar to anyone who has ever been the recipient of bad news from a doctor: “The chances are,” they will say. Or “Studies indicate.” In our case, it was: “It’s hard to say,” and “Given the unusual circumstances.” This part of the conversation took place entirely between the doctor and Evan, a verbal volley of questions and answers that was thorough and exacting, but devoid of any emotion, the sort of exchange you might expect from a doctor and lawyer, each of them confident in their field of expertise. I found the clinical exchange strangely comforting, a temporary forestalling of what was really at stake, and I listened in silence as they went back and forth. There came a moment toward the end of the conversation, however, when my husband became frustrated by the doctor’s vague responses and pressed for a more definitive answer as to what would happen to our baby. We wanted specifics.
The doctor took some time before responding, leaning toward us while pushing the pads of his fingers together in a steeple-like gesture, drawing the tips to rest against his pursed mouth before lowering them as he began to speak. “There is great risk here that the baby will be born with some deformity or with mental deficiency,” he said, his voice measured, the gaze that had failed to meet us when we first sat down, now fixed as we stared back in silence. He then began to list, one by one, the various components of the body that might be marked for abnormalities, his voice a human metronome that recounted in a slow but steady rhythm, “The brain, the heart, the liver, the lungs…” He paused only once during the anatomical inventory, to hand me a box of tissues that was sitting on the desk and that was just beyond the reach of my hand.
A common misconception regarding prenatal testing is that it can provide a definitive answer. It does not. The screening tools of amniocentesis, CVS, blood sampling and sonogram search for biochemical markers, gene mutations and irregularities that can indicate the potential for illness and disability, but not their certainty. It is not an exaggeration to say that in almost every case where an abnormality is detected, there is an inherent ambiguity in that result as to how severe the impact will be, room enough for doubt to creep in, for hope and for faith, all the factors that conspire to create a choice.
Listening to the doctor’s words, I had no hope, and faith was nowhere to be found. Instead was anguish and disbelief, but there was no ambiguity in the response that I swiftly gave. “We have to end this now,” I said, lifting my head to face the expert, who nodded his head in a kind of agreement. I was grateful for that, and for the feel of my husband’s hand, which had reached over to take mine, as well as for the kindness of the genetic counselor, who walked over to touch me on the shoulder. But I was aware just the same that, despite the support shown in that room, there was one factor that was entirely unambiguous: this decision was mine.
The following day my husband and I met with our obstetrician to go over our options. Terminating a pregnancy is legal in New York State up to 24 weeks. But, as we were to learn in our second impromptu medical lesson in just as many days, a late-term abortion is considerably more complicated than ending a pregnancy within the first trimester. It is also far less common: Of the 1.29 million abortions performed in the United States in 2002 (the most recent statistics available), approximately 11 percent occurred after 12 weeks, according to the Alan Guttmacher Institute, the New York-based research group that supports abortion rights. That number is confirmed by a report by the Centers of Disease Control, which translates the 11 percent into approximately 142,000 abortions. While there is scant available research to indicate what percentage of these are undertaken by women because of genetic disorders, doctors and genetic counselors report that many women facing a diagnosis of a medical anomaly will opt to end the pregnancy.
By far the most common technique used in these cases is dilation and evacuation, or a D&E. Under general anesthesia, the cervix is dilated and the fetus dismembered and removed. It takes, on average, 20 minutes to complete. Far less common is the method known as intact dilation and extraction, or D&X. This is the so-called “partial-birth,” procedure (the political and legal term not generally recognized by the medical field), in which the torso of the fetus is evacuated from the uterus before the skull is decompressed, rendering it small enough to be entirely discharged. At the time of our meeting, this method was still legal, although used in less than one-fifth of one percent of all induced abortions. In April of this year, the Supreme Court upheld the Partial-Birth Abortion Ban Act of 2003.
There is another method that operates on an entirely different principle: induction of labor and delivery. This approach works exactly as it sounds. The woman’s body, with the help of the hormone-based drug prostaglandin, is coerced into birthing a fetus not yet sufficiently developed to exist beyond the confines of the womb. As with a live birth, the woman is conscious throughout—but similar to a regular labor, it takes time.
“My advice is to go for the induced labor,” our obstetrician said. I was almost 20 weeks pregnant, and a D&E would present complications, including the possibility of rupturing some scar tissue that had formed from a previous C-section. “The labor should last 12 to14 hours, 16 at the most, and then you’ll be back home.” He appeared tired as he spoke; gone was the upbeat cheer from all our other meetings. During his explanation, he held his hands in an open grip position in front of his chest, as though squeezing an imaginary ball, but at the end he dropped them to the sides of his chair. “I know this is tough,” he said, and it was unclear whether he was referring to us or to himself.
The horror of what he described did not fully take hold until after we returned back home. Haunted by what we had learned, I could not speak of it to the many friends and family who were calling in support, relying on my husband to deal with them instead, but unwavering in my decision nonetheless. I passed the sleepless hours instinctively putting a hand to my stomach every time the baby kicked, yet certain of the act we had chosen.
Our obstetrician miscalculated the length of the labor by approximately 30 hours. It lasted for two days, an odyssey of fear, panic, tedium and pain that wove themselves together in various permutations, bending the notions of time, space—sanity as well—all within the walls of Labor and Delivery Room #2 on the maternity ward of one of New York’s hospitals, distinguished from the 11 other delivery units on the ward by a pink paper heart the admitting nurse had stuck on the door.
In many ways it felt like going through a war: the fight, the resistance and finally the surrender. A window to the outside provided the markings of time, evening into night, then weak rays of light from a winter dawn bouncing off the metal railings of my bed before the afternoon of clouds of gray lead into a another night of darkness. On the second morning I noticed that it had begun to snow.
Helping us through the ordeal was a special unit of labor and delivery nurses trained in perinatal loss: Francine, Donna, Patty and Christina. Speaking in gentle voices, smelling of soap and powder, they kept vigil and never left my side, even at the end, as our son slipped from one world to the next.
Similar in shape and size to that of the most premature infant, he was unable to draw breath because of lungs not fully formed. After the nurses quietly bathed and wrapped him in blankets, the hospital chaplain read a prayer she had composed during the night as my husband and I took turns holding our son, both of us buried in exhaustion, relief and a staggering sense of sadness.
The Discharge Summary included in my medical file recapitulates the event in the medical shorthand doctors use to convey only what is most essential. Among the compact sentences are the following: “The patient’s past medical history was unremarkable. She has no social habits that are remarkable. The patient has opted for therapeutic termination of pregnancy.
At 11:46 a.m., she had a spontaneous vaginal delivery of a male fetus. She remained stable and she was discharged home.”
The summary is correct; the facts are as stated. But it doesn’t tell the truth. I was far from stable in the following days, haunted by the loss that had me stumbling through the obligations of daily life, including the care of a two-year-old child. In misguided attempts at kindness, those around us would refer to what happened as a miscarriage; worse was when close family members chose to tell others, “They lost the baby.” The sanitized phrase would infuriate me. “We didn’t lose him; we know exactly what happened to him,” I would respond.
Not surprisingly, women who have terminated pregnancies following a medical diagnosis may choose not to share their stories with others, reluctant to be dragged into the abortion debate that has so polarized this country and which entirely negates the nuanced shades of gray that exist between each side’s declaration of black and white. I understood why some would hesitate, but I was consumed with a need to talk, and thanks to a final act of kindness by one of our nurses—“Here, take this number,” she had said to my husband on our way out—I found other women who felt the same.
Aformer labor and delivery nurse, she has been helping parents navigate their way through the pounding grief of perinatal loss for over 20 years, falling into “her calling” by happenstance: she was inspired to bring two of her patients together to talk after each had suffered a stillbirth. “And the worst part was that they shared the same doctor, who never told them about each other,” she shakes her head when we recently meet over chicken wraps and coleslaw at the local diner on the night of one of her meetings.
She often shakes her head in amazement at the lack of understanding when it comes to perinatal loss, even among medical staff, who often provide expertise with little regard as to the fallout that inevitably follows. She never says the word abortion—it’s always a “heartbreaking choice”—but the phrase doesn’t rankle like other euphemisms I’ve heard.
It’s been several years since I’ve met with Pam, but when I accompany her later that night to her meeting, there is a similar crowd to the one I remembered from years back: two female teachers, a husband who works in finance, the wife of a soldier about to embark on his second tour of duty in Iraq and a stay-at-home mother who has the dubious honor of having endured both a stillbirth and a termination. A cross-section of socio-economic and religious backgrounds united in one particular belief: a life worth taking is also a life worth mourning.
Earlier I had asked Pam to give me a number of how many women (and men) she has helped over the years. “Oh Lord, I don’t know, hundreds and hundreds,” she said. “They just have nowhere else to go.”
But even within the world of perinatal loss, there are variations, and these surface during the meeting. The memory of holding her baby, recounted by one mother who terminated her pregnancy via an induction and labor, causes two of the other women to noticeably shift their positions in discomfort. It’s unclear as to why this happens, until one of them confesses that she’s angry she was never given this opportunity, having only been offered a D&E procedure. In response, a couple says that they were told by their obstetrician that an induced labor is too traumatic for most women to endure. Later, I realize that the doctor they are referring to is my own obstetrician, but the knowledge brings with it no reaction other than to confirm what is already clear: there is no easy way.
This year’s annual meeting of the Society for Maternal-Fetal Medicine seemed to address this dilemma in its presentation of new approaches to routine prenatal genetic testing that rely on the mother’s blood as a source of genetic information and can therefore be administered within the first trimester (amniocentesis and sonogram typically cannot register abnormalities and defects until well into the second trimester). Chorionic villius sampling is leading the way in this direction, as it can be performed as early as eight weeks of pregnancy.
The complicated field of prenatal testing and the choices it provides women was foremost on my mind when my husband and I first participated in Pam Magi’s Walk to Remember. The annual event draws hundreds of family members who have experienced perinatal loss. Mothers, fathers, siblings and grandparents gather in a municipal parking lot to mark their individual white balloons with personal messages of love and remembrance. The crowd then snakes its way to a designated park, slowly because of the many strollers and baby paraphernalia, yet festive too, the balloons bobbing frantically about.
Like the others, Evan and I marked a balloon. Maneuvering down Main Street, I clutched the string in my hand, feeling its tug in the air. Instinctively, I placed my other hand on my stomach, in contemplation of what I had learned during a recent visit to the obstetrician to see if I might be pregnant once again.
Feeling the probe dig into my skin, I had been surprised to hear my doctor’s laugh. Turning my head to look at the screen, I had seen what he was pointing out: the staccato-like blips that indicate a heart beating in steady rhythm; just beside it, a second beating heart, looking every bit as strong. Chorionic villus sampling performed at eight weeks would confirm the health of the two babies I was now carrying. Two boys, as it turned out, born exactly one year after our heartbreaking choice.
I continued to contemplate the extraordinary turn of events as the crowd reached its destination. At the designated time, I let go of my balloon, feeling the roughness of the string uncurl against my fingers. As it floated up into the sky, I briefly caught sight of what I had written. In uneven, black letters, it spelled the name my husband and I had given our son after he was born: “Eli,” which means “ascended.” Then, along with all the others, I watched it disappear.
