"Death is not always the worst outcome": We're so good at saving babies, and so bad at respecting the limits of medicine and the rights of families

I chose not to bring my son to term. Here's what judges and politicians should know about stories like mine

Published March 26, 2016 11:30PM (EDT)

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Earlier this month, the Supreme Court heard oral arguments in Whole Woman’s Health v. Hellerstedt, the first major abortion case to reach the Supreme Court in almost a decade. The Supreme Court will be considering whether the requirements for facilities that provide abortions in Texas are unreasonably restrictive, but the same bill aims to ban all abortions after 20 weeks, with an exception only for fetal anomalies that are considered “incompatible with life,” a deceptively complicated designation that may not provide either legal protection or clarity to parents forced to make difficult decisions regarding a wide range of serious fetal anomalies, many of which are not discoverable until close to that 20 week cutoff. This case, along with, the new vacancy on the Supreme Court following the death of Justice Antonin Scalia, and the presidential primaries, has thrust the abortion debate back into the national spotlight. Abortions performed due to fetal anomalies, and late-term abortions generally, represent a minority of abortions performed in this country. But much of the recent legislation regarding abortion around the country targets or impacts this subset of cases specifically, and these new laws threaten to do grave harm.

Another state law currently being debated in Ohio would prohibit abortion at any gestational age whenever a diagnosis of Down syndrome has been made, and the state’s governor, the presidential candidate John Kasich, has stated publicly that were the bill to reach his desk, he would not hesitate to sign it into law. An even more restrictive bill has just been passed by the Indiana state Legislature, prohibiting abortion in the case of “a diagnosis or potential diagnosis of Down Syndrome or any other disability,” a shockingly broad category that ironically does nothing to address abortions of healthy fetuses. These bills have the potential to create serious socioeconomic disparities, as women with the resources to do so will almost certainly travel across state lines to obtain abortions when that is the medical decision they have made.

In all of these cases, it is taken for granted that the idea of viability – the point in a pregnancy at which the fetus has a reasonable chance of surviving outside the uterus when supported by modern medicine – provides a useful guidepost for making ethical policy decisions. Think about a perfectly healthy fetus who is old enough that, if born at that very moment, he or she would in all likelihood thrive with the support of the appropriate neonatal intensive care. The idea of injecting potassium chloride directly into that fetus’s heart is distressing enough that it ought to give even the most staunchly pro-choice advocate pause. Then, think instead about a fetus of the same gestational age who has a severe abnormality – a heart, say, that is essentially missing one of its chambers, or a diaphragm with a hole so large all of the contents of the abdomen are up in the chest compressing the lungs. In cases like this, in which survival would require extensive intervention with uncertain outcomes and a risk-benefit profile that cannot be universally agreed upon, the concept of viability based on arbitrary gestational age cutoffs quickly starts to break down.

At the beginning of my fourth year of medical school, I had an abortion, an experience about which I have written previously in detail. At the time, we had a 2-year-old daughter, and we found out during our routine anatomy scan around 19 weeks that the baby boy I was carrying had a severe disease. His kidneys were irreversibly damaged, and as a result, his lungs could not develop properly. No one could predict whether he would die during the pregnancy, shortly after birth, or perhaps survive into childhood if he received neonatal dialysis and qualified for a kidney transplant in the future. For us, the risk of prolonged suffering, pain and grave disability – a kidney transplant at best has a lifespan of 20 years – outweighed the possibility of what we considered to be meaningful quality of life, and we chose to terminate the pregnancy. Preventing our baby’s suffering is a motivation that most can relate to even if they disagree with our ultimate choice. But the aspect of our decision that is harder to talk about – because as mothers, specifically, we are still widely expected to sacrifice everything in the interest of our children – is the fact that we also took into account what it might mean for our careers, for our growing family, and for the trajectory of our lives, if we chose to carry the pregnancy to term.

Late-term abortion and abortion for fetal anomalies are hard to talk about. For many moderates, the idea of simply limiting abortions to the first half of pregnancy, or to undoubtedly lethal conditions only – a surprisingly difficult prediction to make, as I will discuss later – seems like a reasonable and fair compromise. Don’t we have to draw the line somewhere, or else run the risk of allowing unrestrained euthanasia? Absolutist opponents of abortion often point to perinatal hospice and adoption as the morally acceptable alternatives, while unconditional proponents of abortion rights often shy away from the topic entirely, perhaps because it raises questions about a fetus’s perceived humanity and potential human rights that are conveniently avoided if one accepts the formulation that life begins only when the fetus reaches the point of viability.

The problem with all of these arguments, and with the legislation around the country that speaks in broad strokes about “viability,” “lethal” anomalies, and “protecting women and children,” is that these simple "political" concepts are surprisingly resistant to having any serious medical, ethical or practical meanings. We are now so good at “saving” babies, and yet still so bad at having frank discussions, even within the medical community, about quality of life and the limits of medicine, that what gets lost in the middle is the fundamental rights and interests of the women, families and children who are at the center of these stories.

As a pediatrician-in-training and now the mother of three healthy daughters, I think frequently about our son, and the decision we made. One of the first patients I took care of as a resident was a toddler whose prenatal diagnosis was eerily parallel to our son’s. Every morning when I walked into his room to examine him and see how his night had been, I would see his tiny body curled up in the hospital crib, his G-tube hooked up to continuous feeds. I would see his mother sleeping on the fold-out chair underneath a scratchy hospital sheet, and I would wonder what it would be like if it were my son in that crib, if it were me sleeping on the makeshift bed. I can’t pretend to know anything about that mother’s beliefs or the decisions she made while pregnant, about the dreams and plans she had for her boy’s future, or about how her life may have changed when she took on her role as his mother and protector, always by his side. What was obvious, though, was that she loved her son dearly, just as I would have loved our son had he been born. When I think about our son, I wonder what color his soft, sweet hair would have been, and I check the perpetually running calendar in my mind to see how old he would be today. I wonder if, had we continued the pregnancy, I would be here in this hospital room as a resident or as a mother; if I would have quit my medical training entirely, a path that was already challenging enough with a young daughter and a husband with a busy career.

Critics of abortion frequently leverage the accusation that abortion is tantamount to “playing God.” Many perceive a fundamental difference between withdrawing or withholding life-sustaining care, on the one hand, and abortion, an active procedure intended to cause fetal death. One needn’t spend long in an academic tertiary care hospital to understand, however, that the provision of intensive perinatal care is far from passive, and that the lengths we go to preserve life could just as fairly be considered “playing God.” The potential pain and suffering associated with life-prolonging medical interventions, and the downstream consequences for families, society and the economy – these are not automatically ethical or noble just because they are undertaken in the pursuit of life and survival. And as one of my mentors, a kind and accomplished physician who was born and trained in Europe, told me after my termination, “death is not always the worst outcome.”

Part of the trouble comes from a naïve understanding – widespread even among many medical professionals – of the murky complexities of medical prognostication and interventions. Standards of care for many fetal conditions – the majority of which are not diagnosed until the routine anatomy ultrasound that is recommended at 18 to 20 weeks gestation – are shockingly dependent on differences in institutional culture and resources, and on personal differences among doctors. For our son, if he had survived past birth, would the nephrologist who was on call in the neonatal intensive care unit have been one who believes that starting dialysis in a newborn is ethically obligatory, or one who feels that it is morally permissible to decline? For babies born with hypoplastic left heart syndrome, a condition that is uniformly fatal without surgical repair, some pediatric cardiologists believe that palliative care is not an ethical option to offer anymore; others, likely thinking of children like the 5-year-old I took care of who had been in the hospital since his third birthday, contending with heart failure, then a heart transplant, and then post-transplant cancer, feel strongly that it remains a morally acceptable and personal choice.

For some families, the phenomenal advances that have been made in neonatal intensive care and in medicine more broadly have opened up wonderful, meaningful choices. Opting for certain life-prolonging interventions may allow a family to gain more information by seeing how their child responds to a “trial” of therapy; to prevent complicated grief about “giving up without trying”; or to extend and shape the quantity and quality of time they have with their child. A recent study of families of children with trisomy 13 and 18 – conditions historically considered lethal, though such infants can sometimes survive well into childhood – concluded that many families find deep meaning and satisfaction in pursuing life-prolonging measures, which is an important challenge to the long-established paternalistic assumptions throughout the medical community that babies with trisomy 13 and 18 have lives that are uniformly not worth living.

There is a grave risk, however, of idealizing and glorifying such choices, and thereby perpetuating deeply entrenched forms of sexism and discrimination. The meaning and consequences of caring for a child with a severe, chronic medical condition may be vastly different for a young single mother with limited financial resources and secular beliefs than for a stay-at-home mother in a religious, financially comfortable, two-parent household. Continuing a pregnancy complicated by severe anomalies can have significant physical, psychological and socioeconomic effects on mothers and families. There are non-trivial concerns about the risks associated with pregnancy and delivery, the emotional impact of continuing a pregnancy with a gravely ill fetus, the psychological impact on siblings and family dynamics, and the logistical and financial details of how to access and afford the intensive medical care their child may need. Different families will prioritize these considerations differently, but the bottom line is that these perinatal decisions simply do not occur in a moral vacuum. It is certainly not possible to pick a point in time – like 20 weeks, in Texas – and conclude that reasonable and ethical choices are possible on one side of that line, but not possible on the other.

Ultimately, reasonable individuals – physicians and non-physicians alike – will continue to hold diverging views about abortion and fetal anomalies, views that are on both sides rooted in strong and earnest beliefs about compassion and justice. In a country in which the political right is railing against government involvement in healthcare, let us not accept the hypocritical stance of permitting vast and increasing government restrictions on what for many is an intimate, wrenching and personal medical decision. In the thick of the political chaos, amid the rhetoric and the vitriol, let us not fall prey to the belief that medical heroism is the only answer and that life and survival must be valued above all else. As a senior medical student facing our baby’s diagnosis, I had already gotten glimpses not just of heartwarming medical triumphs, but also of cases in which outcomes were poor, and families were left to navigate through the aftermath and the potential for strained finances, strained relationships, and hard decisions about life-prolonging treatments and quality of life, in a society and a medical system that is poorly equipped to provide the needed help and support. I had learned the resistance profile of antibiotics and the indications for starting dialysis, but I had also learned that a great deal of medicine remains as much an art as a science, and that among the statistics and quoted prognoses, no one could tell us what the right thing was for our family given the particular constellation of risks, challenges and possibilities. So, we made the gut-wrenching decision for our son to live and die knowing only the warmth and safety of my body. For us, it was the most right and just decision in a situation that was, by all measures, impossibly wrong.

By Phoebe Danziger

Phoebe Danziger, M.D., is a resident in pediatrics at the University of Michigan.

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