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WHAT WOMEN REALLY THINK ABOUT NEWS, POLITICS, AND CULTURE.

FEB. 5 2014 11:51 PM

A Peaceful Death
Aborting my son was not about when life begins, but how to end it
humanely.
By Phoebe Day Danziger

As with most of medicine, prenatal diagnosis is a

combination of art and science.
Photo by Moodboard/Thinkstock

n medical school these days, a decent amount of time is devoted to the ethical
issues around end-of-life care. Im 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 highfrequency mechanical ventilation, delicate features overwhelmed by lines and tubes,
miniature wrinkled ngers stroked by parents gargantuan hands. We ask: What kind of
suering is this baby experiencing? What kind of quality of life will he or she have? But what
we dont 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 fetusdid 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 talkingobstructive uropathy, distal urethra
appears to be involved, very echogenic kidneys, massive bladder dilation,
concerned about the babys lung developmentI 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-denition wall-mounted monitor in stark black and white, bouncing up
and down each time I cried.
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After the ultrasound, we spent the afternoon talking to the maternalfetal 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 lls and lls with urine, until it backs up all the way to the
kidneys, where the urine is produced in the rst place. Over time, this causes the
kidneys to become massively distended, eventually resulting in irreversible damage.

The amniotic uid surrounding a fetus is made up of urine produced by the fetal
kidneys. Fetal lung development depends on having appropriate amniotic uid 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 uid 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 uid 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 uid 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 uid.

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 eective, or at least ameliorative, in certain situations. Because of my familiarity
with what many of the dierent therapeutic and palliative care options entailed
medically, ethically, personallyit 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 ip 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 Mommys 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 sons 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 wellmeaning but utterly glib commentsItll be ne! 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 didnt feel so invisible.
My story is not uniqueI 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 reections and perspectivesand 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 babys 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 dene her relationship to the fetus. Im
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-prole
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 beginsis 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 its 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 selsh reasons.
Had we not aborted, our sons 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 suocate to death at birth, his small body gasping to ll 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.
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