In medical school these days, a decent amount of time is devoted to the ethical issues around end-of-life care. I’m a hopeful future neonatologist, so the relevance of the topic to the perinatal period is abundantly clear. We can conjure up images of the 23-week micropreemie lying in an isolette, tiny chest jiggling on high-frequency mechanical ventilation, delicate features overwhelmed by lines and tubes, miniature wrinkled fingers stroked by parents’ gargantuan hands. We ask: What kind of suffering is this baby experiencing? What kind of quality of life will he or she have? But what we don’t talk about much in medical school, or anywhere else for that matter, is the idea of end-of-life care before independent life has even begun.
The day of our anatomy scan was the last day of my third year of medical school. I was 19-weeks pregnant, and we were so excited to have a sibling for our 2-year-old daughter. Chatting with my ultrasound tech as she squeezed the warm jelly onto my abdomen to get started, I asked her what she did when she found something terribly wrong with the fetus—did she tell the parents that she was seeing a problem, or did she leave it to the maternal-fetal medicine doctor to come in and break the news?
When the doctor came in and started talking—“obstructive uropathy,” “distal urethra appears to be involved,” “very echogenic kidneys,” “massive bladder dilation,” “concerned about the baby’s lung development”—I could feel the exam table shake underneath me as I heaved and sobbed. As she scanned, I could see our son up there on the high-definition wall-mounted monitor in stark black and white, bouncing up and down each time I cried.
After the ultrasound, we spent the afternoon talking to the maternal-fetal medicine doctors, along with the genetic counselor who is always called in after parents receive an unexpected fetal diagnosis. Our baby had what is called a bladder outlet obstruction, meaning that the urine that was being stored in his bladder was unable to exit. The bladder fills and fills with urine, until it backs up all the way to the kidneys, where the urine is produced in the first place. Over time, this causes the kidneys to become massively distended, eventually resulting in irreversible damage.
The amniotic fluid surrounding a fetus is made up of urine produced by the fetal kidneys. Fetal lung development depends on having appropriate amniotic fluid levels, particularly during certain critical periods of lung development in the second trimester. When the kidneys are damaged or the bladder is obstructed, lung development can be irreversibly halted.
As with most of medicine, prenatal diagnosis is a combination of art and science. There are ways to visualize, quantify, and predict kidney and lung function prenatally, but all of these data points have their limits. You can see kidney damage on the ultrasound a few ways, such as by how bright the kidneys appear (their “echogenicity”) and how distended they are, and by how much amniotic fluid there is surrounding the fetus. Lung development is trickier, though predictions can be made based on the level of kidney damage, the size of the lungs on the ultrasound or other imaging modalities, and the amniotic fluid status.
Our conversations that afternoon narrowed in quickly on prognosis. For our baby, there was a fairly wide range of possibilities. The essential facts were that he had extremely severe damage to both of his kidneys, to his bladder, and to his urethra, which drains the urine from the bladder. Because of his gestational age, it was a near certainty that his lung development had been seriously compromised. It was possible that he would be stillborn, meaning that he would die in utero at some point during the pregnancy or during labor and delivery. It was possible that I would go into preterm labor with him, and it was possible that the pregnancy would go all the way to term.
At birth, he could have breathed spontaneously or not at all. He probably would have needed at least some assistance with breathing, and given the severity of the damage, he most likely would have required mechanical ventilation, if we chose that route. Would his kidneys be functional? Would they be able to produce some urine, or none, or so much that his body would dump all its fluid and essential salts and so on? If he survived at birth but his kidneys failed, would he be a candidate for dialysis? For a kidney transplant? What does it mean to have an infant on dialysis? On dialysis and mechanical ventilation? A toddler on the transplant list? We barely even talked about the minor concerns, like the club foot seen on ultrasound, an expected complication from physical compression of fetuses with low amniotic fluid.
We could have chosen to speak with pediatric subspecialists from neonatology, nephrology, urology, and/or palliative care to talk about options for his care, both prenatally and after birth, though based on the severity of his condition, it was clear that he would not be a likely candidate for some of the prenatal interventions that can be effective, or at least ameliorative, in certain situations. Because of my familiarity with what many of the different therapeutic and palliative care options entailed—medically, ethically, personally—it was clear to me that what we were dealing with was choosing an end-of-life care plan for our son. And because my husband and I believe more in evidence than in miracles, we knew that the appropriate time to implement that plan was now. We did not explicitly consider the potentially tremendous cost of pursuing aggressive treatment or the psychological impact on our daughter and our family of continuing a pregnancy with what would end up being, one way or another, a dying child, but in retrospect those concerns were implicit in our decision-making.
It was a Friday afternoon, and we scheduled the dilation and evacuation for Monday morning. It was surreal to exist in the world that weekend in such a liminal state, to walk around feeling our baby kick his little legs and flip around, knowing that after Monday I would never feel him again. I woke every hour those nights, nauseated and heavy-chested, knowing that this little person who was here with me would soon be gone. Our daughter understood only that the little baby in Mommy’s tummy was very sick.
I have since given birth to another healthy daughter, who could not have been born had we not chosen to end our son’s life when we did. Until I was holding her in my arms, wet and pink and screaming and healthy, I felt an underlying sense of grief and anxiety, which no amount of ultrasonographic proof of her perfect anatomy, nor well-meaning but utterly glib comments—“It’ll be fine! So-and-so had a miscarriage at seven weeks and now has a healthy 4-month-old!”—could quell. Even now, watching our daughter gleefully smear avocado all over her face and hair, grinning her joyful, toothy, lopsided grin, I think about our son. I wonder if we gave up on him. I wonder if we should have stayed the course and become the neonatal intensive care unit parents I see sitting up groggily on the makeshift bed as the team of residents bursts into the room for rounds before the sun is up, the parents’ new lives playing out against a soundtrack of beeping monitors, pump alarms, and ventilators playing their strange, honking melody. I wonder if we made the right decision for him, and I wish that his brief existence didn’t feel so invisible.
My story is not unique—I am part of a group of 20-odd other mothers who have also terminated pregnancies for medical reasons, and many of us have shared remarkably similar reflections and perspectives—and yet there is not an easy language for situations like ours. These types of late-term abortions for medical reasons occupy an uneasy place in the mainstream dialogue about abortion. Opponents of abortion may argue that terminating my pregnancy violated our baby’s human rights and that if anything, we should have continued the pregnancy and opted for palliative care at birth. The more surprising and hurtful responses, however, have been from people like my staunchly pro-choice friend who told me that she was jarred by my use of the word son to describe our fetus, as though the moral basis for abortion depends on denying the fetus any semblance of humanity, no matter how close it is to the point of viability, no matter how the woman herself chooses to define her relationship to the fetus. I’m not sure I explicitly thought of our fetus as our son until the day of that ultrasound, but after entering a situation in which we had to consider medical decisions that included imagining our long-shot, best-case scenario as trying to get our little boy through a year or two of preschool before getting a kidney transplant and starting on lifelong immunosuppressive drug therapy, there was no way to think of him otherwise.
Why does any of this matter right now? In recent months, there has been high-profile legislation across the country seeking to ban abortion after 20 weeks or earlier. This is precisely the point at which many fetal anomalies are diagnosed in a pregnancy. My own state, Michigan, recently passed a bill prohibiting insurers from providing coverage for pregnancy termination, with no exceptions for circumstances like fetal anomalies or rape, unless women have purchased a special policy in advance, as though this is a situation anyone would anticipate and plan for. The rhetoric surrounding abortion focuses primarily on the question of when life begins—is the fetus a baby at six weeks? 12? 20?—and whether women have the right to make choices about their pregnant bodies. In our case, abortion was a parenting decision—the most important and powerful one I have yet to make. This might not be comfortable or convenient for the pro-choice narrative, but it’s the truth. Some aspects of abortion might rightfully be best considered in the context of when life begins, but in situations like ours, the most salient fact was how and when life should end.
Sometimes I wish I had chosen to continue the pregnancy for purely selfish reasons. Had we not aborted, our son’s birth would have been noted, his death would have been marked, and our deep and long-lasting grief would have been acknowledged and validated. Instead, we chose to give our baby what we felt was the most humane, comfortable, and loving end-of-life experience we felt we could facilitate, a cause that on its face is championed even in the most introductory ethics discussions among new medical students.
Because of the choice we made to end his life, our son never got the chance to gaze up at his parents, to see who it was that had been talking and singing to him all along. He never got the chance to fall asleep in our arms, bundled and cozy, pink lips and fuzzy hair like a duckling, smelling of milk and baby, the very best smell in the world. Neither, however, did he have to suffocate to death at birth, his small body gasping to fill his woefully hypoplastic lungs. He did not have to feel pain shooting throughout his abdomen, grossly distended with urinary ascites. He did not have to experience one minute away from the warmth and love of my body. We chose, instead, for him to be born straight into peace.