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.